News & Events
See Events Page for details.
30th May 2015
13th June 2015
Northwood (NEW VENUE)
13th June 2015
4th July 11am-4pm
Moreton in Marsh, Glos
23rd - 25th October 2015
The Hayes Conference Centre,
21st May 2015 - Volunteers required for education research project
- Do you have Albinism?
- Are you aged 16-25?
- Do you live in the UK or Ireland?
- Would you like to take part in a research project to help improve education for children and young people with albinism?
Albinism Fellowship Trustee, Roselle Potts, is looking for young people to interview over the phone about their educational experiences. The phone interviews will take approximately one hour and you will receive a small gift voucher as a thank you for your time.
To find out more about this research contact email@example.com
7th May 2015 - UN Human Rights Commission Albinism Website
The United Nations Office of the High Commissioner for Human Rights has launched a new website on albinism: Not Ghosts but Human Beings.
The site features information about albinism and some of the human rights issues that people with albinism face.
It also features stories from members of the albinism community around the world, including Gold-winning Paralympic skier Kelly Gallagher.
30th March 2015 - Report from Connect Albinism Day in Derry/Londonderry
The Derry/Londonderry Connect Albinism event took place on Saturday 21 March at RNIB. Attendees had the opportunity to hear about the Low Vision Clinic and services for people with sight loss at their local Hospital, Altnagalvin. Ivan Drinan, Optometrist showed the group various low vision aids and discussed their general queries.
This was followed by lunch and an information session on the upcoming Albinism Fellowship UK & Ireland conference in Derbyshire in October 2015. Our final session was a talk from Danny Cartin, one of our members who is studying architecture at university.
Over the Moon Children's entertainers held an arts and crafts activity for the children during the talks.
The event was very relaxed and informal and a great opportunity for people to meet and share their stories. Many thanks to RNIB staff Donna McNicholl and Paula Meenan for all their help on the day as well as to Ivan Drinan and Danny Cartin for their very interesting and informative talks.
23rd February 2015 - Science Museum Family Events
The Science Museum in London is running free family events for visually impaired or bind visitors on Sunday 15th March.
Four events have been created specifically for families with members who are visually impaired or blind. Times and details are as follows:
10:45 - Audio Described LaunchPad Rocket show and touch tour
Join us for an Explainer-led interactive show exploring how rockets get into space, what they do when they're up there and how they get back down again - all with the help of Sir Isaac Newton. Live Audio Description of this show will be available along with a touch tour of the props before the start of the show.
(Families with children aged 7 +. Approx. 1 hour)
13:00 - 'Backpacking to Mars' storytelling
Discover what it would take to get to Mars in this interactive astronaut training session. Find out about eating, exercising and going to the toilet in space, collecting items on your journey to take home with you.
(Families with children aged 7+. Approx. 40mins)
14:00 - Object handling of Information Age gallery artefacts
Hold history in your hands with objects from the Science Museum's collection. Find out what they are made from and how they transformed the way we communicate and share information.
(Families with children aged 7+. Approx. 30mins)
14:30 - Information Age Gallery Tour
The Information Age gallery celebrates more than 200 years of innovation in information and communication technologies. Discover the six zones: The Cable, The Telephone Exchange, Broadcast, The Constellation, The Cell and The Web, on a tour of our biggest gallery to date.
(Aimed for adults, but children welcome. Approx. 30mins)
Places will be restricted, so if you are interested in attending any of the events or would like some more information, please book or contact Lucy Minshall-Pearson, a family and accessibility developer on: firstname.lastname@example.org.
Although Albinism Fellowship is not responsible for this event, our Trustee, Roselle Potts will be at the 13:00 event with her own children.
8th February 2015 - Nystagmus Network Open Day
Nystagmus Network are holding an Open Day at on Saturday 9th May, at the Centre for Life Newcastle upon Tyne.
This event provides an opportunity for people affected by nystagmus to meet professionals working in the field and find out what it's like to have the condition.
Click to buy tickets.
29th January 2015 - Request for people with albinism for magazine article
We have been contacted by Rebecca Stubbs from Mercury Press, who is looking to write a feature article on albinism for womens' magazines and national newspapers.
She is ideally looking for a teenage girl with albinism, or a mother whose children have albinism.
The people involved would be given a full readback and paid a fee on publication in the magazines. If she decided to meet them and take professional photos, they would be emailed the set of photos after the publications have used them free of charge.
If you are interested in taking part, please contact Rebecca directly at email@example.com
Please Note: Albinism Fellowship has vetted the original approach to ensure that it seems reasonable. However, it is up to particpants to ensure they are completely happy with what is involved. If you are not comfortable, you are fully entitled to change your mind at any time.
14th December 2014 - VICTA Family Weekend open for booking
VICTA, a charity supporting visually impaired children, are now accepting applications for their Family Weekends in March and August 2015.
If you are interested in these events, please see the 2015 Activities page on the VICTA website.
8th December 2014 - Support the AF while you do your Christmas Shopping
Want to help support the Albinism Fellowship every time you shop online?
Easy Fundraising is a website that allows you to shop at your favourite online retailers (Amazon, Argos, M&S etc) whilst raising money for AF.
All you have to do is sign up for an account with Easy Fundraising via the Albinism Fellowship cause page. Then whenever you want to buy an item online, follow the link to the retailer from the Easy Fundraising site. Each time you buy an item, the retailer will donate a small amount to AF without it costing you anything.
For full details, see the Albinism Fellowship Page on Easy Fundraising.
30th November 2014 - AGM Minutes, Accounts and Annual Report
The minutes of the 2014 Albinism Fellowship Annual General Meeting along with the accounts and annual report for 2013/2014 are available for download below.
Annual Report and simplified accounts - As presented to members at the AGM.
24th November 2014 - Report from the Nottingham Event & AGM
The Albinism Fellowship's AGM took place on Saturday 22nd November alongside a family event at Jesse Gray School in West Bridgford (near Nottingham).
The event was well attended and we welcomed a number of new families who had never been to an Albinism Fellowship event before.
During the AGM, Chair, Mark Sanderson, presented the AF's Annual Report and Treasurer, Joanne Bennett, provided a statement of income and expenditure for 2013/2014. Both of these will be available on this site shortly. The existing board of Trustees was re-elected to serve for another year, though members were invited to express their interest in future trustee vacancies.
Meanwhile, the kids were enjoying face painting and entertainment from Pogo the Clown.
After the formal AGM, members had a chance to view the new Albinism Interviews, recorded at the London BBQ. We are aiming to have these available to view via the AF website and social media channels soon.
Thanks to everyone who came along and those who brought tasty cakes and treats to share. We look forward to seeing everyone again soon.
18th November 2014 - Report from the Ireland Conference
The second one-day Albinism Conference in Ireland took place on Saturday 15th November at the ChildVision Conference Centre in Dublin. 90 people attended from around Ireland and the UK including many children and adults with albinism.
A creche was provided for the under 12s while the adults were treated to a varied programme in the main hall.
First up was a presentation from Educational Psychologist, Joan Curran around education and employment for young people with albinism (Click to Download). This was followed by a 'Parents Panel', where parents of children with albinism had a chance to share their experiences and answer questions.
While the adults had lunch and browsed the exhibition of products and services, the children in the creche got a very special visit from Santa, who had kindly agreed to take time out of his busy pre-Christmas schedule to drop in and give gifts to all of the children.
After lunch, we had a presentation from Prof Michael O'Keefe, a consultant ophthalmologist, who provided an overview of albinism from a clinical perspective (Click to Download). We were then treated to a talk on Sports & Recreation from Paralympic Athelete with albinism, Catherine Walsh and Frank Cullinan, who provides swimming coaching to people with visual impairments.
The final session in the formal programme was an Adults with Albinism panel, where three adults with albinism shared their experiences of living with the condition and took questions.
After the formal part of the conference, many of the delegates headed over to the nearby Skylon Hotel for a gala dinner. After a tasty meal we were treated to musical entertainment from AF Trustee Roslaeen Dempsey and, our special guest, Andrea Begley, Winner of The Voice 2013 and a long time friend of Albinism Fellowship.
We hope that everyone enjoyed the day and would like to extend our thanks to everyone involved in organising and running the event, especially Rosaleen Dempsey, Treasa O Callaghan and Mark Sanderson who worked tirelessly to make it a great success.
Thanks also to everyone who came along, with more events coming up in Ireland in 2015, we look forward to seeing you all again soon.
4th November 2014 - Doing some fundraising? Let us know how we can help.
As a small charity, Albinism Fellowship depends on donations to fund our activities, and we are very grateful to all of our members and supporters for all of the fantastic fundraising that you do.
If you are planning on carrying out fundraising activities (sponsored events, bucket collections, quiz nights, etc) it would be great if you could let us know in advance by sending an e-mail to firstname.lastname@example.org. We can then provide you with leaflets to distribute at your event, along with copies of our logo to use on promotional materials, posters, t-shirts, etc. We can also advise the best way to get the funds to AF once the event is complete.
Thanks again for all your support.
Albinism Fellowship Trustees
4th October 2014 - Upcoming events at ChildVision, Dublin
ChildVision in Dublin (the venue for our upcoming conference) are holding a Family Resource Day on Wednesday 15th October, this includes:
Training Day - 'The impact of Visual Impairment on your child's development'
Running from 10am-2pm, are hosting a free open training day for parents of children with visual impairments aged from 0 -12 years.
Click here for full details and booking form (MS Word)
Bookings must be received by 9th October.
A showcase at which toys and games are available for this year's Christmas gift list. Items on display have been carefully selected for their educational and therapeutic value to children with vision impairment or other challenges.
Free of Charge - 10.30am - 2.30pm in the Conference Centre, ChildVision
Click here for flyer (PDF)
19th August 2014 - Upcoming VICTA events
VICTA, a charity supporting visually impaired children, have two upcoming events which may be of interest to our members:
Baby & Toddler Family Weekend - Sat 25-Mon 27 October - Worcester
This event caters for visually-impaired children in the 0-5 age bracket, and will be held at New College, Worcester.
For more details and to apply, please see www.victa.org.uk/baby-and-toddler-family-weekend.
18-29 Youth Weekend - Sat 7-Mon 10 November - Thetford
This weekend is open to applicants 18 to 29 years old and will be held at Thorpe Woodlands Adventure Centre, in the beautiful surroundings of Thetford Forest.
For more details and to apply, please see www.victa.org.uk/18-youth-weekend-7th-9th-november.
The closing date for applications is Tuesday 7 October
8th August 2014 - Approaches from TV producers through social media
We are aware that a TV production company has been contacting individuals with albinism through social media, seeking participants for an upcoming show.
Although whether you take part is entirely your choice, we strongly recommend treating these requests with caution and making sure you know exactly what the producers' intentions are before agreeing to anything.
TV programmes can often be a good way to raise positive awareness of Albinism but there have been past instances where people have had negative experiences as a result of participating.
If you would like more information or any advice, please feel free to contact us.
3rd July 2014 - Ireland Conference Date Change
We have changed the date of the Ireland Conference to Saturday 15th November 2014. We want to make the conference as useful and enjoyable possible and we need a little more time to make this happen. We apologise for any inconvenience this change may cause. We hope to see you all in November at ChildVision Dublin. All other information on venue and times remains the same.
20th June 2014 - Report on the Dublin BBQ
Treasa O Callaghan reports:
We had a good day at the Dublin BBQ on the 14th June at St John's GAA clubhouse in Ballinteer. We had an attendance of fifty people.
People came from places as far away as Cork, Clare, Monaghan, Belfast and Kildare. It was an enjoyable day and I noticed that adults & children are getting to know each other more and more which is good. We had all age groups present.
Thanks to Betty Kenny & Martin McKeown who helped out with the cooking. We also had a lovely selection of cakes and sweets that people brought along. Children were occupied with paper, crayons & PE equipment while adults had a chance to chat and share ideas. We now look forward to the next event at ChildVision on the 27th September 2014.
We need fund raisers for this event so please get in touch if you have any ideas e.g. a cake sale, a no uniform day at your child's school.
14th June 2014 - Ireland Conference Announced
After the success of the first Ireland Conference in 2012, we are pleased to announce that we will be holding another one-day conference in Ireland on Saturday 15th November.
The venue will be the ChildVision Conference Centre in Drumcondra, about 3km north-east of Dublin City Centre.
Located close to Dublin's road, rail, air and ferry links, the venue is easily accessible from most parts of Ireland and Northern Ireland as well as North Wales and Liverpool by ferry.
Full details and booking information will be available shortly. Keep an eye on http://conference.albinism.org.uk for the latest information.
9th June 2014 - Presentation & important information regarding Northern Ireland Nystagmus & Albinism Study
You can now download the Northern Ireland Nystagmus & Albinism Study presentation given by Dr Natasha Healey at the Connect Albinism Day in Belfast.
Albinism Fellowship would like to inform its members that Dr Natasha Healey is no longer affiliated with the Royal Victoria Hospital, nor the University of Ulster and all involvement/funding for her albinism research has ceased.
She can now only provide further information regarding the NINA study, or albinism queries in general. Please use the email email@example.com for these queries.
Individual cases must be addressed with your own ophthalmic consultant.
9th June 2014 - Visual Impairment Training Course
Westminster Special Schools are running a Visual Impairment training session in London on Monday 7th July 2014: 9.00-4.00.
Presented by Maurice Sparrow, the Westminster Advisory Teacher for visually impaired children, the course is relevant to those supporting children with vision impairment, also ideal for parents & young people with vision impairment.
The day will include a talk from an eleven year old pupil with albinism and a session on living with Nystagmus.
7th June 2014 - Save the date 2015!
Next Family Weekend Conference announced.
We are pleased to announce that our next family weekend conference will be held from Friday 23rd - Sunday 25th October 2015 at The Hayes Conference Centre, Swanwick, Derbyshire.
The Hayes is an established venue for charity events which combines good conference facilities with affordable family accommodation. It offers us a blank canvas to arrange activities we need for all ages. We are starting to make plans for the event now and will provide more information in the autumn.
2nd June 2014 - Report on the Connect Albinism Information Day in Belfast
Rosaleen Dempsey reports:
On 31st May 2014 we held a Connect Albinism information Day in the RNIB NI offices in Belfast. Approximately 60 people attended the event including children and families and adults with albinism. Toys, games and activities were provided for the children by Over the Moon Children's entertainment and RNIB NI and the day began with a talk from Senior Optometrist Dr Natasha Healey. Natasha updated us on her Northern Ireland Nystagmus & Albinism Study and many people had their questions answered on albinism.
Before lunch the RNIB NI Shop team gave attendees a tour of the new shop and products available to them.
Our personal story came from 17 year old Shannon Cartin who has albinism and is training to be a welder. Some lively discussion and questions and answers followed her very interesting story. Rosaleen Dempsey, NI Contact Person gave an update on upcoming Albinism Fellowship events including the conference in Dublin due to take place in September 2014.
The event was extremely well attended and we would like to thank all those who came along. We would also like to express our gratitude to the RNIB NI staff and volunteers who helped out both before and on the day of the event including Amy and Louise from the shop and the Children and Youth Team's staff and volunteers; Jordan, Charlene, Paula, Sandra, Laura, Donna and Sam who took photos for us on the day. We could not run events like this without the support of this great team.
23rd May 2014 - Belfast mini-marathon update
AF Ireland Contact Person, Treasa O Callaghan, provides an update on the Flora Women's Mini-Marathon in Dublin
Reminder that the Flora mini-marathon is on Monday 2nd June 2014.
Catherine Cooper, Flo Duffy & Stephanie Baille are participating to raise funds for Albinism Fellowship.
We ask people who would like to sponsor them to please do so by making a donation to AF via JustGiving.
We need funds for the upcoming mini conference event in Ireland.
I have posted on some t-shirts to our participants. If there are any more people doing marathon for AF please let me on 086 3789294 or firstname.lastname@example.org and I will forward t-shirts.
19th May 2014 - Volunteers required for short video on albinism.
AF Trustee Roselle Potts is looking to put together a short (5-6min) video about albinism and AF for our YouTube channel, and is looking for volunteers to take part.
We are looking for people who would be willing to be interviewed on-camera about their experience of living with albinism and how they have benefited from attending Albinism Fellowship events.
Participants can be people with albinism or their family members and of any age (Under-18s will need consent from a parent/guardian).
It is intended that interviews will take place alongside the London BBQ on 7th June. They'll take place in a separate room, so only those who wish to take part will be included in the video.
If you would like to take part, or find out more information, please e-mail email@example.com.
19th May 2014 - Wobbly Wednesday
Organised by Nystagmus Network, Wobbly Wednesday is an international day to raise awareness about nystagmus (the 'wobbly-eyes' which is a common symptom of albinism).
This year, Wobbly Wednesday will take place on 5th November and people around the world are being encouraged to organise awareness and fund-raising events in their communities to support the work of Nystagmus Network.
28th April 2014 - Nystagmus Network Open Day
Nystagmus Network are holding an Open Day on 28th June in Leicester.
The open day will provide an opportunity to learn about nystagmus (one of the common symptoms of albinism) and meet others with the condition.
There will also be the opportunity to speak to professionals from the biggest nystagmus research team in the UK, and hear from Paralympic rower Sarah Caffrey, who has nystagmus.
For more info and to book, please see the event page on the Nystagmus Network site.
16th April 2014 - Fundraising Opportunity - Flora Women's Mini-Marathon, Dublin
AF Ireland Contact Person, Treasa O Callaghan, is taking part in the Flora Women's Mini-Marathon in Dublin to raise funds for Albinism Fellowship and would like to know if anyone wants to join her.
This is a 10K race which takes place on Monday 2nd June and is open to women of any ability, from walkers to elite runners.
Registration closes this Friday (18th April). You can register online or using the form in the Evening Herald newspaper.
If you are planning to walk or run for AF, please contact Treasa on 086 3789294 or firstname.lastname@example.org and she will be able to sort out t-shirts.
If you are taking part in the mini-marathon, or any other fundraising event, you can easily create a JustGiving sponsorship page to send to friends, family and colleagues.
JustGiving handle all of the payments, including Gift Aid, and send the money directly to Albinism Fellowship, saving you the hassle of collecting donations.
To create a JustGiving page in support of Albinism Fellowship, please visit www.justgiving.com/albinism and click on 'Fundraise for us'.
9th April 2014 - Walking 100 Miles for Albinism Fellowship
AF Trustee Martin Lang and his neighbour, Adam Fowler, are walking 100 miles from Winchester to Eastbourne to raise funds for Albinism Fellowship.
They are starting on Sunday 13th April and plan to finish in 5 days. Vodafone have generously agreed to match the first �350 raised.
We wish them the best of luck, and good weather!
If anyone would like to donate, please see Martin & Adam's JustGiving page at https://www.justgiving.com/Adam-Fowler1.
19th March 2014 - Vision Sports Ireland - MayFest
Vision Sports Ireland has just announced details of MayFest, Ireland�s biggest sports and leisure weekend for people of all ages who are blind or vision impaired. MayFest 2014 will take place at the ALSAA Sports Complex, beside Dublin Airport, on the weekend of 23rd - 25th May.
The weekend provides an opportunity for blind and visually impaired people to try their hand at a wide variety of sports, alongside demonstrations and social events.
For more info and to book, please see the Vision Sports Ireland website.
17th February 2014 - Annual Report & Accounts
The Albinism Fellowship's 2013 Annual Report and the accounts for 2012/20131 are now available for download below.
6th January 2014 - Consulation on changes to VTHVI service in Ireland
Important news for parents of children with albinism in Ireland from Treasa O Callaghan:
The VTHVI (Visiting Teacher Hearing & Visually Impaired) service in Ireland is up for review! There are questionnaires available to be submitted on-line or they can be downloaded & posted if preferred. Please click for more info.
It is important that teachers, principals, parents/children and concerned organisations fill out these questionnaires in order that children/teenagers in question will have access to an appropriate education system so that their education will not suffer. This feed back will determine whether the Visiting Teacher Service is going to survive or change and thus impact on pupils� education & their future.
There are many brilliant visiting teachers and their expertise could be used in management. This is an area that needs a lot of attention. These visiting teachers could co-ordinate the system and thus inform the inspectorate. They would also ensure that best practice is enforced by having regular collaboration among the team of visiting teachers. Of course information and help could also be sought from organisations such as the NCBI and Child Vision if and when the need arises.
You may contact me at email@example.com or at 0863789294 for further information. I am submitting the questionnaire on behalf of Albinism fellowship UK & Ireland.
Please inform your school and forward them the above link. Teachers need a visiting teacher service in order to help these children. Parents also need visiting teachers for many reasons. The deadline for submitting these questionnaires is the 20th January 2014.
9th December 2013 - Report from Dublin Christmas Event & AGM
Treasa O Callaghan reports from the Dublin Christmas event & AGM on Saturday 30th November.
We had a great day for all age groups at our first Christmas event for AF in Dublin.
People travelled from places as far away as Galway, Cork, Kerry, Monaghan, Meath, Offaly, Belfast and the UK. About sixty people attended the event.
Nelly Pelly entertained the children with face painting and a parachute. Santa arrived with presents for the children.
Adults enjoyed nibbles, mince pies and mulled wine. Children had party food. Later we had a guitar player who coaxed children to sing Christmas songs. All commented that they enjoyed the day.
The AF AGM took place alongside the event, the annual report and accounts were presented to members and these will be placed on this website shortly.
Happy Xmas to all.
6th November 2013 - Albinism Fellowship statement regarding recent media stories
We are aware that there have been reports in the British media about the alleged and suspected abductions and removals of children with blonde hair and blue eyes from their families. We believe that in these cases it is worth bearing in mind that due to genetics, not all children look the same as their parents, which can be the case with children with albinism and their parents, or vice versa.
15th October 2013 - AF at VisionZone Belfast
Albinism Fellowship will be exhibiting at VisionZone Belfast on 22nd October. We will have leaflets, information and products for sale.
VisionZone is an exhibition of equipment, resources and services for people who are blind or partially sighted. In association with RNIB Northern Ireland and Optelec UK.
VisionZone takes place on Tuesdayo 22 October 2013, 10.00am to 2.30pm at the Olympic Suite, Holiday Inn, Ormeau Avenue, Belfast, BT2 8HS.
For full details, please see the VisionZone page on the RNIB website.
11th October 2013 - Report from the Derry/Londonderry Connect Albinism Event
On 28th September 2013 we held a Connect Albinism Information Day in the RNIB Office in Derry/Londonderry. Rosaleen Dempsey, Trustee and Northern Ireland Contact Person for the Albinism Fellowship, welcomed everyone to the event and introduced the programme for the day, which included a presentation from Donna McNicholl about the new RNIB NI Realise Project, a transitions project for young blind and partially sighted people funded by the Big Lottery Fund. This was followed by a talk from Thomas Quigley about the Campaigns Active Network, a new platform for blind and partially sighted people and their allies to campaign on issues that affect them.
Lunch and an arts and crafts workshop for children were provided, giving parents and adults with albinism an opportunity to mix and share experiences. In the afternoon Rosaleen discussed the future plans for the Albinism Fellowship conference in Ireland, which is planned for September 2014. The group shared some great ideas and tips for the programme.
As always there was a personal story element to the day. This time it was from Laura McCauley, a young woman with albinism who volunteered on the Visually Impaired Volunteers International Development (VIVID) project in the Gambia in 2012. Laura helped to set up the new Gambian albinism organisation and her talk was received with great interest from the group.
Huge thanks to all who helped to make the day so enjoyable. In particular, thanks to Paula Meenan for volunteering on the day and to Laura McCauley, Donna McNicholl and Thomas Quigley for their talks. Thanks to all who attended the event and shared their ideas for future information days and the conference.
12th September 2013 - Can you help with pre-conference publicity?
We are hoping to achieve some positive publicity for our work and raise awareness of albinism around our family conference & leisure weekend at Ribby Hall Village, Lancashire on 11th-14th October.
Do you/your family have a story to tell in relation to albinism? Have you achieved something significant in your life that you want to share?
We are keen to identify individuals/families willing to be involved in awareness raising in the media and sharing your experiences of living life with albinism. How you overcome challenges as well as positive messages.
Interested? If so please email firstname.lastname@example.org straight away.
We are especially interested in families living in the North West, given that's where we will be holding the event.
28th Aug 2013 - Rescheduled Albinism Family Day in the West Midlands - 5th October
Sandwell Council have rescheduled their Albinism Family day for Saturday 5th October, and families in the area are welcome to attend. See Events Page for details.
This event was previously scheduled for March, but had to be cancelled due to the snow.
For more information and to book, please contact 0845 352 7552.
More details will follow soon.
Please note: This event is not organised by Albinism Fellowship. For details and to book, please call the numbers above.
10th August 2013 - Inspired By Albinism - Conference Bookings now open
Bookings for 'Inspired by Albinism,' the Albinism Fellowship's Family Conference & Leisure Weekend, are now open.
Head on over to the Conference Page for more details and to download a booking form.
8th August 2013 - 'The Heat' movie - Don�t be too quick to judge
Albinism Fellowship member Andrew Bennett reviews action film The Heat on behalf of AF. The views expressed here are his own.
So, as the proud father of two girls with albinism, how offended am I by a character with albinism in the Hollywood action comedy The Heat? Should I be offended?
Judged on the character�s portrayal throughout the film, which stars Sandra Bullock and Melissa McCarthy, I have mixed feelings.
The Heat (certificate 15), which was showing at UK cinemas this summer, is a pacey, wise-cracking action packed drama set in Boston featuring a DEA agent with albinism who is involved in tackling a vicious drugs lord.
There are, sadly and perhaps inevitably (look at Hollywood�s record in portraying people with albinism) some wisecracks about the DEA agent�s appearance. The most printable is: �Are you OK � you look pale?� along with other jibes which may cause (understandable) offence among the albinism community.
I didn�t enjoy this, or the other such banter. But for context to those who haven�t seen this film; much flows between the DEA agent, his partner, and the two tough female law enforcement agents (Bullock as workaholic FBI agent and McCarthy as a foul-mouthed but dedicated Boston city police officer).
The DEA agent, who plays an important but not pivotal role, is guilty of misogynistic insults to the women as they battle to bring �the heat� down on the violent drug baron.
None of which makes comments about albinism acceptable. But The Heat is more palatable in its portrayal of people with albinism than the Da Vinci Code, or, The Matrix Reloaded. Not that it�s done a great job.
I�m no fan of the way Hollywood links being a bad guy with an unrelated rare genetic disorder (see my blog) but balance here, please.
The DEA agent character does show someone with albinism in a responsible, significant role fighting crime.
Now, wouldn�t it be truly refreshing for Hollywood to make someone with albinism the genuine hero (or heroine)?
About Andrew Bennett. Andrew is father to Jessica (aged six) and Rebecca (two) who have type OCA1A albinism. He is married to Albinism Fellowship trustee Jo Bennett and runs a writing and PR business (www.bennettwords.biz) Twitter: @bennettwords
2nd August 2013 - Documentary Opportunity
Are you a family interested in being in a documentary about albinism?
Lion Television are doing some casting for a potential Channel 4, early evening, series on families that are in some way different or exceptional.
The aim of the series is to demonstrate what life is like for families that have some kind of physical or behavioural differences that set them apart but also to show that despite surface differences, the things that make a family are the same for everyone � love, caring, hope etc.
One of the areas that they are looking at is albinism. We are trying to find a family where the parents and children all have the condition.
The tone of the series will be warm, sensitive and honest and it will hopefully dispel many of the myths and misinformation about albinism.
If you would like to know more about Lion TV, please visit our website (www.liontv.com). We are a multi award winning, independent television company. We have made the successful Channel 4 series, 16 Kids and Counting as well as dozens of sensitive, access based documentaries such as Transplant (BBC 1) and Children�s Hospital.
If interested, please contact: Jessica Gomez on 020 8846 2118 or email@example.com.
Note to members: Whilst we only share with you media enquiries that appear to be legitimate, sensible and aiming to promote a positive understanding of albinism, please be aware that you are making a personal decision to get involved. Whilst most experiences are positive, we cannot guarantee that this will always be the case. Albinism Fellowship does not accept liability for any consequences of taking part.
24th July 2013 - Report from AF & Positive Exposure event in Dublin
On Sunday 21st July, Albinism Fellowship held a small event in Dublin, where we were joined by Rick Guidotti of Positive Exposure.
Attendees had an opportunity to talk to Rick about the work of Positive Exposure, and of course, get their photos taken.
Rosaleen Dempsey also talked to Rick about the PEARLS Project, click here to listen to the interview (MP3 format).
This project puts people with albinism and other genetic conditions in touch with students, teachers and medical professionals through online blogs. 'PEARLS Ambassadors' provide regular updates about their daily lives and Positive Exposure publishes them online and filters any questions and feedback.
Originally started in the USA, Rick is now looking for PEARLS Ambassadors in the UK & Ireland, so if any of our members are interested in taking part, please see the PEARLS Project website to find out more.
We'd like to thank Rick for taking time out of his always-hectic schedule to join us, and look forward to seeing the pictures from the event!
26th Jun 2013 - Report from London BBQ
The annual London Summer Meeting & BBQ took place on Saturday 15th June at Oak Tree School in Southgate.
Turnout was good and the children enjoyed themselves on bikes and the school's new climbing frame, giving the adults the opportunity to share experiences and advice.
Fortunately the rain held off until everyone had finished cooking and the trustees gave everyone an update on AF activities and the upcoming conference in the nice and dry school hall.
Thanks to everyone who came along, and special thanks to Helen for organising the event and Jo for arranging the raffle at short notice.
The raffle raised a fair bit of money towards our upcoming Family Weekend Conference, thanks very much to everyone who donated prizes.
14th Jun 2013 - Request for Albinism documentary participants
We have received the following request for people to take part in a a documentary on albinism.
My name is Mashaal Mir and I am a broadcast journalist based in London. I'm currently working on a short documentary about albinism, and how it affects lives of those living with it in the UK. I am specifically looking for South Asian individuals (Indian, Pakistani etc) in the UK who have albinism. Would you know anyone who could help me, or could point me in the right direction?
The short documentary is, currently, for online purposes but may be submitted to film festivals etc.
If you need any more information, please let me know.
If you are interested in participating, please contact Mashaal directly on 07583 461504 or via www.mashaalmir.com.
14th Jun 2013 - Request for help with Nystagmus Network Research
Leicester University's Rebecca McLean is developing a questionnaire to measure the impact of nystagmus on quality of life.
We know that, as well as making it hard to see, nystagmus can sometimes make people feel lonely, isolated, depressed and lacking in self-esteem. But we don�t have a way of measuring this side of nystagmus, so that�s the gap Rebecca wants to fill.
If you�re an adult with nystagmus, live in the UK and haven�t yet taken part, phone or email Rebecca (0116 258 6290 or firstname.lastname@example.org) for a copy of the questionnaire and she will post it to you.
12th Jun 2013 - Report from Dublin Albinism Day
Treasa O Callaghan reports from the Dublin Albinism Day & BBQ on Saturday 8th June:
We had a very good attendance to the BBQ & Info day at the St John�s GAA clubhouse. It was good to meet people again and also nice to meet new people. All age groups were present. Despite the hot weather, people travelled long distances from far away counties such as Cork, Donegal, Monaghan, Antrim, Wicklow Kilkenny, and Dublin of course. Chris Fenlon from Hermansky Pudlak Syndrome Network travelled from the UK.
Professor Michael O Keeffe, ophthalmologist & surgeon, gave an informative presentation on albinism.
Andrew Costello, an IT officer from Trinity College gave a detailed presentation on the support offered to third level students in Trinity. He also listed various gadgets and low vision equipment available to students. Click to download Andrew's presentation (PDF format).
People present gained valuable knowledge and also enjoyed meeting up and making new friends. Joan Curran, educational psychologist also attended and was available to offer advice to people if needed.
We had a lovely BBQ, prepared by Betty McCarthy. Thank you to people who brought cake and salad on the day.
I had sports equipment, crayons & paper and a parachute downstairs in case the children got bored but everyone was so busy mingling etc that we did not need them after all!
We now look forward to Rick Guidotti�s visit to St John�s GAA clubhouse on Sunday the 21st July 2013 at 1pm.
Looking forward to meeting you all again soon.
Treasa O Callaghan
9th Jun 2013 - Swimming for the AF
AF member Craig Hollowood is taking part in the 'Great North Swim' on Saturday 15th June.
He will be swimming for a mile across Lake Windermere to raise funds for Albinism Fellowship.
We wish Craig the best of luck, to support him please visit his fundraising page at www.justgiving.com/Craig-Hollowood.
6th Jun 2013 - Report from Albinism Information Day at Jordanstown Schools, Newtownabbey on 25th May
A group of parents, families, children and adults with albinism attended the Connect Albinism Information Day at Jordanstown Schools for Children with Visual and Hearing Impairments. While an arts and crafts facilitator took a session for children, the adults listened to a talk from Dr Maria Napier, Trainee Specialist in the Ophthalmology Department of the Royal Victoria Hospital, Belfast on the basics of albinism with reference to recent studies conducted n Northern Ireland.
Following the talk the principal and vice principal of Jordanstown Schools took the group on a tour of the facility, giving people a chance to see all their new resources including a recording studio and accessible ICT suite and a swimming pool used for hydrotherapy.
At lunchtime children played in the soft play room and the sensory garden, taking advantage of the good weather. After an update from the Albinism Fellowship the group were treated to music from singer/songwriter and contestant on BBC's "The Voice" 2013, Andrea Begley.
We would like to thank Anne Magee and Myrtle Shannon, Principal and Vice Principal of Jordanstown Schools for all their support and the use of their lovely venue. Huge thanks also to our guest speaker Dr Maria Napier and to Andrea Begley for singing at the event. Last but not least, thanks to our fantastic RNIB volunteers, Jordan, Charlene, Sandra, Sam and Paula. WE really appreciate everyone's help in making this a great event.
25th Apr 2013 - Report from Cork Albinism Day
Georgina Brennan reports from the Cork albinism day:
The Cork AF meeting took place on Saturday 20th April at the O�Rahilly Building, UCC.
Linda Doran, the assistive technology officer in UCC, gave a very interesting and informative talk about the Disability Support Service available to all students with a visual impairment who are attending or thinking of attending third level education. She had plenty of tips and advice for us parents too and though for some of us with younger kids it is a few years away yet, it was invaluable. Linda also gave us a tour of the assistive technology resource lab which is a fantastic facility.
Treasa O�Callaghan, contact person for AF Ireland travelled from Dublin and was on hand to give information regarding the upcoming BBQ day in Dublin in June and the conference in October in Blackpool.
The numbers attending were small however it was great to catch up with old friends and make some new ones as well.
22nd Apr 2013 - Family Conference Updates
We are still in the process of firming up the programme for our Family Weekend Conference in October, and we already have our first confirmed speaker, Dr Patricia Lund, a Geneticist from Coventry University.
As we are still in the process of fundraising and putting together the programme, the final conference delegate rates will not be confirmed until June.
The highest they will be for Albinism Fellowship members is �80 per adult and �45 per child under 12.
The delegate fee will probably include 2 dinners, 1 lunch and a breakfast during the weekend as well as all conference sessions.
We are holding off confirmation until June to see how much we can fundraise to offset fees. There will be a range of fee types so the above is just for guidance at this stage.
AF members will have a lower fee than non-members, so please do consider joining.
We need to raise at least �10,000 to make the conference what we want it to be. Can you help?
If we can raise this we can include in the event:
- Family activity workshops
- High quality sessions with speakers from around the world
- Social activities
If we raise more we can also offset catering costs which will bring delegate fees down for you.
So, please help:
- Does your employer support charities? Could they donate? Some companies match fund employees fundraising.
- Can you community fundraise for us? Raffles, runs, swims, coffee mornings, pub race nights and the like. Tell us what you can do.
- Would your school choose us as their charity of the term/year and fundraise for us?
- Do you know anyone connected with a charitable trust who may be able to support us? Applications to trusts can be more successful if someone has a connection with them.
- Do you know of or have a connection with a company that could sponsor the event? Examples include:
- Cr�che facility: �2,000
- Welcome reception: �900
- Refreshments: �250
- Family activity workshop programme: �1,500 or single elements �500
- There are advertising and promotional opportunities for sponsors as a result of their support.
- Would you, a friend or family member be willing to make a direct donation to the AF?
If you can help or know who can do let us know via email@example.com now and keep an eye on the funding gauge on the conference page for current progress!
6th Apr 2013 - AF Member on RTE Radio Documentary
Albinism Fellowship member, jazz singer Victoria Geelan is the subject of a 40-minute documentary on RTE Radio 1 (Ireland) being broadcast today, Saturday the 6th April at 6pm. It will be repeated on Sunday, 14th April at 7pm.
For more details and to listen again on the RTE player, please visit http://www.rte.ie/radio1/doconone/
22nd Mar 2013 - Tomorrow's Events CANCELLED
Due to heavy snow the Albinism Information Day in Derry/Londonderry and the Sandwell Albinism Family Day have both been CANCELLED!
Apologies to anyone who was planning to attend. Both events will be rescheduled.
16th Mar 2013 - Conference Accommodation Now Available to Book
Accommodation for our Family Weekend Conference (11-14 October) is now available to book.
See the Conference Page for full details.
15th Mar 2013 - Media Opportunity
John Balson, a Reporter with Barcroft Media would like to hear from people interested in the following media opportunity:
SUMMARY: I am a journalist with Barcroft Media press agency looking to cover a story on albinism in the UK. I am looking to produce an inspirational story about a person or group of people, such as a family, about living with albinism. It could be someone who has overcome stigma to do something amazing or someone who has never let albinism hold them back from enjoying life to the full. I would be able to give final copy approval to ensure the story is both accurate and a fair reflection.
Interested? Contact John direct at firstname.lastname@example.org or call 0207 923 1827.
Albinism Fellowship statement:
Please note AF is not managing this contact. Following up the opportunity would be your choice and the relationship would be direct between you and the media company. We have spoken to the company following their approach to us and as far as we can reasonably tell their intentions are honourable to give a positive portrayal of albinism.
15th Mar 2013 - In the Shadow of the Sun
As part of Human Rights Watch film festival AF is sponsoring a showing of In the Shadow of the Sun, a film highlighting the atrocities faced by some people with albinism in some parts of Africa.
We are very sensitive to the fact that the content of this film will not be for everyone but see supporting HRW's film festival as part of our responsibility to raise awareness of the problems being highlighted in the hope this mobilises more global support to address them.
13th Mar 2013 - Albinism Research Questionnaire Request
We have received the following request from Mary Keena, a final year Psychology Student at Dublin Business School who is doing a research project on albinism:
My Name is Mary Keena, I am a final year Psychology Student at Dublin Business School. As part of my degree I have to carry out a research project which looks at the differences in coping strategies, social anxiety and self esteem, between people with and without Albinism. This project is being carried out under the direction of Dr. Barbara Caska.
I greatly appreciate your assistance with this by completing the following questionnaire, please say what you really think and try to be as honest and accurate as possible. There are no 'right' or 'wrong' answers to these questions. Do not pause for too long over any one question. Your answers are completely private and you do not have to write your name anywhere. I hope you will find the questionnaire interesting and enjoyable to do.
10th Mar 2013 - Hot Galaxy Warm Heart
Albinism Fellowship has applied for a grant from the 'Galaxy Hot Chocolate Fund' to help support upcoming events.
This fund provides grants to 20 organisations each month, one of which is decided by popular vote.
Please help support AF's application by voting for us at www.hotgalaxywarmheart.com/fund/albinism-fellowship.
6th Mar 2013 - Albinism Family Day in the West Midlands - 23rd March
Sandwell Council are holding an Albinism Family day on Saturday 23rd March, and families in the area are welcome to attend.
Albinism Family Day
Saturday 23rd March, 10:30-2:30
The Orchard School, Causeway Green Road, Oldbury, B68 8LD
Only �10 per family!
On the day, there will be Children & Young People�s workshops, Robin Spinks from Albinism Fellowship will talk about Living and Learning with Albinism and young adults with Albinism will be talking about their lives and experiences.
To book, please contact Sandwell VI team - Annie Bearfield or Ruth Armstrong at Inclusion Support on 0845 352 7552 or 07900 466667
Please note: This event is not organised by Albinism Fellowship. For details and to book, please call the numbers above.
17th Feb 2013 - Report from the Nottingham Family Day & AGM
On Saturday 16th February, the Albinism Fellowship held a Family Day alongside the AGM in Nottingham. Despite it being a new location, turnout was excellent with over 35 people present and several new faces.
After a picnic in the dining hall, the children had the opportunity to get their faces painted, play and make new friends whilst the AF's AGM took place in the main hall.
Martin Lang presented the Chair's report for 2011/12 and Mark Sanderson presented the accounts and an update on plans for the Family Weekend Conference in October.
The report and accounts will be published on the website shortly and further details on the conference will be published in the next couple of weeks.
Robin Spinks and Lorna Stacey have decided to step down from the board of trustees, though both will continue to support the AF's activities as volunteers. We would like to thank them both for their valuable contribution to AF over the last few years.
This does mean that there are currently vacancies for trustees, if anyone is interested in the role, please get in touch.
Many thanks to everyone for coming along, and special thanks to Joanne Bennett and family for organising and running the event.
There are further regional events coming up in the UK & Ireland during 2013, keep a close eye on the Events Page where details will be published as soon as they are confirmed.
10th Feb 2013 - Interview on BBC R4 'Saturday Live'
AF Chair Mark Sanderson and his wife Lorna (who both have albinism) were interviewed on BBC Radio 4's 'Saturday Live' show on Saturday 9th Feb.
You can now listen to their interview online - The segment starts at around 47mins.
30th Jan 2013 - The Undateables C4 9pm Tues 22 January 2013
Statement in response from Albinism Fellowship
The C4 series Undateables features people with disabilities experiences of finding a partner and love and follows their journeys to begin a relationship through a dating agency.
The episode broadcast on January 22nd featured a young man called Damian who has albinism. AF was not involved in the making of the programme but was aware it was to be broadcast and asked C4 to put our contact details on their website as a source of support to those affected by the programme.
Through the volume of online activity since we know that there are a variety of views across the albinism community about the portrayal of albinism in the programme.
We think it important to recognise the programme sought to reflect the personal real life experiences of one person with the condition. Some of the issues Damian faced due to an apparent lack of confidence and self-esteem in building relationships are similar to those experienced by some but certainly not all other people with albinism in our experience.
People with albinism can and do live meaningful lives with loving relationships, educational and other achievements and successful careers. Albinism involves a partial sight, susceptibility to sunburn and visual distinctiveness. With appropriate support these do not need to become barriers to leading a full life.
We exist to support everyone affected by albinism and we know from experience that there is a lot to be gained from coming together to learn about and share experiences of the condition. This enriches ones understanding of albinism and facilitates the process of acceptance and builds confidence and self-esteem.
We thank Damian for bringing albinism to the attention of more people. If you have been affected by this programme or if you would like to learn more about albinism, access our services or come along to one of our positive, sociable and supportive events please do contact us via www.albinism.org.uk
Trustees of Albinism Fellowship, 27.1.13
22nd Jan 2013 - Undateables, Channel 4, 9pm, Tuesday 22nd Jan.
This week�s Undateables features Damian who has albinism. AF has not been involved in the making of this programme. However, we have asked for our contact details to be added to relevant C4 websites. Undateables features disabled and other people who share their highs, lows and laughs with regards to finding a partner and love due to being different including a visual distinctiveness. Inevitably it will only illustrate a small number of perspectives but some of you may find it of interest.
7th Jan 2013 - Happy New Year & Membership Subs Reminder
Happy New Year to all of our members
As our subscription year begins in January, subscriptions are now due from all members (unless you joined after October 2012 or are a Life Member).
If you wish to remain a member, which will entitle you to receive your twice yearly copy of Albinism Life, discounted rates at our conference in October, and be kept in touch with all that we do, please renew your subscriptions.
You can do this by visiting the payment page on GroupSpaces. (Ensure that you either sign in to your Groupspaces account using the 'Sign In' button on the top right, or enter the e-mail address associated with your account when making the payment).
Please also take the time to review and update your Groupspaces account details while you are there.
If you are not able to pay online, please contact us for another option.
Please Note: From 2012 onwards, we stopped accepting payment by Standing Order. If you believe you are currently paying your subscription by standing order then please note we have not received any money this way as the account is closed. You will need to contact your bank to ensure the Standing Order has been stopped, and renew your subscription through GroupSpaces.
If you have any queries about your membership or are unable to access your Groupspaces account, please raise a support ticket and we will get back to you as soon as possible.
Please bear in mind that our use of Groupspaces is still new and there may still be some outstanding unresolved issues with queries that we are unaware of.
2013 will be an exciting year with the upcoming Family Weekend Conference in October and a programme of regional events in the planning stage.
Please keep an eye on the website for details as they are confirmed!
14th Nov 2012 - 'Introduction to Albinism' presentation from Ireland Conference
Dr Sarah Chamney, Ophthalmology Specialist Registrar at the Royal Victoria Hospital Belfast, gave an 'Introduction to Albinism' presentation at the Ireland conference.
The slides are now available to download in PDF format.
19th Oct 2012 - NCBI Open Day
National Council for the Blind, Ireland, (NCBI) are holding an 'Information Day for Health Care Professionals and Others Working in the Community' on Tuesday 23rd October.
The event will take place form 10am-4pm at: NCBI Clondalkin, Solas Centre, Unit 8 Oakfield Industrial Estate, Clondalkin, Dublin 22.
For more details, call 01 4056950
8th Oct 2012 - Paralympic Talent-Search in Dublin
Paralympics Ireland are running a Talent Search event in Dublin on Saturday 13th October.
The event takes place between 10.30am and 4.30pm at the Sports Centre, University College, Belfield, Dublin 4 - accessible via Clonskeagh Road or N11 Stillorgan Road.
The event will feature:
- Exhibition areas for Paralympic Sports
- Opportunities to take part
- Expert advice on what sports suit your disability type
- Demonstrations of Elite Paralympic Team Sports
- Presentations by some of Ireland's Paralympic heroes such as Michael McKillop
- Information on how to continue your involvement after the event.
8th Oct 2012 - 'Albinism & Education' presentation from Ireland Conference
Educational psychologist Joan Curran gave a presentation on Albinism & Education at the Ireland Mini-Conference in September.
The slides are now available to download in PDF format.
As promised at the conference, this presentation has also been passed onto NEPS (National Educational Psychologists Service), INTO (Irish National Teachers Organisation) and the SESS (Special Education Support Service) in Ireland.
3rd October 2012 - Report from Ireland Mini-Conference
The Albinism Fellowship held their first ever Albinism Ireland Mini-Conference on Saturday 29th September 2012 in the Fairways Hotel, Dundalk, Ireland. This was an event for people with albinism, family, friends and professionals.
This conference was the first of its kind to take place in Northern Ireland and the Republic of Ireland. It was organised by the Albinism Fellowship (UK & Ireland) and the Royal National Institute of Blind People (NI). It was funded by the Sensory Engagement Project, RNIB Northern Ireland and the Community Foundation for Ireland. The conference included a full information and discussion based programme, a cr�che and exhibition area.
Treasa O'Callaghan and Rosaleen Dempsey from the Albinism Fellowship welcome people to the conference
Mark Sanderson, Chair of the Albinism Fellowship said, "In recognition of our growing membership across Ireland, North and South and an increasing awareness and interest in albinism generally, we are delighted to be able to increase our activity through this conference."
Danny McSherry from the Sensory Engagement Project & Kelly Gallagher, Paralympic Alpine Skier from Northern Ireland
Rosaleen Dempsey, Albinism Fellowship Trustee and Contact Person for Northern Ireland said, "This was an exciting opportunity to raise the profile of albinism in both Northern Ireland and the Republic of Ireland and to let people living here learn more about the support and services available to them."
The first topic covered in the conference programme was about albinism and its effect on vision. This talk was given by Sarah Chamney, Registrar in the Ophthalmology Department of the Royal Victoria Hospital, Belfast. This was followed by a parent and preschool panel discussion. Panellists were parents of children with albinism or parents with albinism.
Joan Curran, an Educational Psychologist working in the Republic of Ireland gave a talk on educational assessment for children with low vision associated with albinism. Her talk included useful tips for parents of children at both primary and secondary school.
The final panel discussion was entitled "Living with Albinism" and the panel was made up of adults with albinism who were involved in the fields of paralympic sport, music, higher education or campaigning.
The exhibition area hosted services for both Northern Ireland and the Republic of Ireland. Among these services were RNIB Northern Ireland, The National Council for the Blind of Ireland, specialist schools for children with sight loss, parent support organisations and assistive and adaptive technology companies.
Sandra Watts, a parent of a child with albinism said, "Thank you for all your hard work at the weekend. We thoroughly enjoyed the day and were very glad we made the trip. My son made a new friend from Northern Ireland. He is also 10 years old and they got on great and made all sorts of plans for keeping in touch".
Treasa O'Callaghan and Rosaleen Dempsey from the Albinism Fellowship welcome people to the conference
While one of the main aims of the conference was to provide information to parents and families, children and adults with albinism the most important element of the event was peer support. This was included in all feedback received for the conference. Our sincere thanks go to all our funders, our staff and volunteers, the exhibitors, the speakers, the media who publicised the conference and of course all the attendees for making the day so enjoyable.
Now that we have seen the great need for events like this, The Albinism Fellowship plan to host more events like this in the future.
3rd October 2012 - Pony Up for a Ponytail and raise funds for the AF
AF Trustee Daniel Hill is re-growing his 'student ponytail' to help raise funds for the Family Weekend Conference.
For each �1 donation to the AF, Daniel will go one more day without getting his hair cut.
He's hoping to reach at least �365, which will ensure the long hair will last until the start of the conference in October 2013.
To donate, and see a sneak preview of what to expect, please see his fundraising page at www.justgiving.com/PonyUp.
24th Sept 2012 - Ireland Mini-Conference Press Release
The Albinism Fellowship (UK & Ireland) invite you to our first ever Albinism Ireland Mini-Conference
Saturday 29th September 10am - 5pm in the Fairways Hotel, Dublin Road, Dundalk, Ireland
This is an event for people with albinism, family, friends and professionals.
Albinism is a comparatively rare genetically inherited group of conditions which results in a reduction or complete lack of pigment (colour) in the skin, hair and eyes of people with the condition. This can result in pale skin which burns easily in the sun, virtually white hair, very severe short-sight and photophobia (a severe sensitivity to light).
There are two types of albinism, that which affects the skin, hair and eyes (oculo-cutaneous albinism) and that which affects just the eyes (ocular-albinism). The most common type is oculo-cutaneous albinism. There are a number of distinct types of albinism which are associated with different genes. For further information see www.albinism.org.uk/about_albinism.php.
This conference is the first of its kind to take place in Northern Ireland and the Republic of Ireland. It is organised by the Albinism Fellowship (UK & Ireland) and the Royal National Institute of Blind People (NI). It is funded by the Sensory Engagement Project, RNIB Northern Ireland and the Community Foundation for Ireland. The conference has a full information and discussion based programme, a cr�che and exhibition area.
Mark Sanderson, Chair of the Albinism Fellowship (UK & Ireland) said, "In recognition of our growing membership across Ireland, North and South and an increasing awareness and interest in albinism generally, we are delighted to be able to increase our activity through this conference."
Rosaleen Dempsey, Albinism Fellowship Trustee and Contact Person for Northern Ireland said, "This is an exciting opportunity to raise the profile of albinism in both Northern Ireland and the Republic of Ireland and to let people living here learn more about the support and services available to them."
Topics at the conference will include general medical information about the condition and its effect on vision, a panel discussion on parenting and pre school issues and a talk by various professionals on education and employment opportunities and support. The final session will be a panel discussion on living with albinism, led by adults with albinism from disability sport, the arts, campaigning and music backgrounds.
The exhibition area will host services for both Northern Ireland and the Republic of Ireland including RNIB Northern Ireland, The National Council for the Blind of Ireland, specialist schools for children with sight loss, parent support organisations and assistive and adaptive technology companies.
For further information please contact
Albinism Fellowship (UK & Ireland)
Tel: 028 9033 4116
23rd Sept 2012 - Report from Five Shires Event
A glorious autumn day welcomed the Five Shires event to Moreton-in-Marsh. This was the first of our events advertised and subscribed to via Groupspaces and we are pleased to say that the event was well attended with over 30 adults and children.
Like many of the Fellowship�s regional events the main purpose was to facilitate families meeting one another and share learning experiences. Many thanks to Sarah�s mum for providing entertainment for the children so the adults had time to talk - all those years in education were invaluable!
During the day there was a short presentation on Sarah and Jack�s experiences of the school system from primary to GCSE�s, offering their thoughts on how they had overcome some of the challenges. There was a lively debate and parents reported back they enjoyed this section and found the debate useful.
You can downlaod the presentation here (PDF).
Many thanks to everyone who took the time to attend the Five Shires event and contribute to a really successful day.
20th Sept 2012 - SEN Draft Legislation
The government has published draft legislation on Reform of provision for children and young people with Special Educational Needs.
It is quite possible that these changes will have a major impact on children with albinism as they go through education.
It is available to download in PDF format.
13th Sept 2012 - Fundraising News
GP Ian Seymour will be running the Great North Run on behalf of Albinism Fellowship. The run is a half marathon between Newcastle and South Shields and the route includes the Tyne Bridge.
Ian is Godfather to Edward, aged 3, who has albinism. So we are wishing him all the best for Sunday 16th September.
To sponsor Ian go to www.justgiving.com/Doc-Ian.
7th September 2012 - 'I Survived Skin Cancer' - article on albinism in the Irish Independent
Laura Fucci is an Italian with albinism, now living in Ireland.
Check out this article in the Irish Independent, in which Laura talks about her experiences living with albinism and her battle with skin cancer.
Laura also runs a beauty and fashion blog and will be providing make-up tips at the Ireland Mini-Conference on 29th September.
3rd September 2012 - Request for Magazine Contributions
The editors (Hilary, Martin & Alexa - our new junior editor) of Albinism Life are looking for interesting articles for the next edition.
Do you have anything you would like to contribute?
We are interested in news, stories, photographs, achievements, a laughter line, fundraising, comments, helpful hints etc. ... you know the kind of thing we'd like!
Please send all your contributions to email@example.com by 14th October, 2012.
We are here to help if you need it with editing, re-phrasing or we'll write it for you if you just want to tell us - send us your (landline) phone number if that is the case.
Looking forward to hearing from YOU - we all have something to share!
28th July 2012 - Vodafone Fundraising matching for AF
Thanks to Aisling Mcconvey and Vodafone, there is now a way to make donations to the AF go even further.
Simply text the word 'cayd99' followed by your donation amount in � (e.g. 'cayd99 �10') to 70070. Vodafone will then match every �100 raised!
Your donation will come out of your mobile phone credit (if pre-pay) or be added to your phone bill (if contract). The text message will cost you nothing.
You can also Gift Aid your donation by following the instructions that will be sent in reply to your text.
28th July 2012 - AF Trustees featured in the Guardian
AF Trustees Mark Sanderson & Lorna Stacey, and their son Edward are featured in an article in the Guardian.
In the article they discuss their experiences of living with albinism, and their decision to have a child with albinism.
Read the full article online here.
25th July 2012
Thanks to everyone who took part in raising funds and awareness as part of Albinism Awareness Week.
We need to keep up the momentum to enable us to run our upcoming mini-conference in Ireland and Family Weekend Conference, and will be continuing to push the Big Difference fundraising initiative.
For ideas of how you can help, please see our Big Difference fundraising page. Any contribution is appreciated, no matter how small.
22nd July 2012 - Alexander Dewar in the Daily Mail
The Daily Mail have published an article featuring Alexander Dewar and family. Check out the article on the Daily Mail website.
9th July 2012 - Albinism Awareness Week Begins
The post on our Facebook page has received over 300 unique views today!
There has been some press coverage in Nottingham. Look out for articles in the Nottingham and Trent Valley Journal and the Nottingham Post over the next few days.
5th July 2012 - NCBI Careers Seminar in Dublin & Online
NCBI is holding a 'Connecting the Dots' Careers Seminar on Saturday 7th July (11am-4pm) at the NCBI Rehabilitation Training Centre, Whitworth Road, Drumcondra, Dublin 9.
The seminar will also be broadcast online.
The 'Connecting the Dots' seminar aims to equip those looking for work, or thinking of career choices with useful information that is most appropriate to people with impaired vision. Whether you are in education at present, considering further training, or maybe looking to change career, then this event is for you!
Blind and vision impaired people across a varied work spectrum will speak about their own personal experiences of education, finding work and the challenges involved. There will be plenty of time to have your questions answered as part of two panel discussions, that will be scheduled during the day.
The cost to attend the event is �3.00, which covers lunch. Remote participation will be facilitated via a live web audio stream.
If you wish to register to attend the event or to participate as a remote attendee please contact Stuart Lawler on 087 992 6360 or email firstname.lastname@example.org.
For more information see the event page on the NCBI website.
29th June 2012 - Carrying the torch for albinism
Some exciting news from the Olympic Torch Relay:
AF Member, and GB paratriathelete Sara Krishan (nee Butler) is going to be carrying the Olympic Torch on Sunday 1st July at 7:30am through Solihull!
For more, see Sara's Torchbearer Profile on the London 2012 site.
27th June 2012 - Family Weekend Conference & Albinism Awareness Week
We are delighted to announce our plans to run another family weekend conference from Friday 11th � Monday 14th October 2013.
The event will take place at Ribby Hall Village in Lancashire. The site offers an excellent range of accommodation types and facilities.
For full details of the event, please see the Conference Page. Further details will be added as planning progresses.
The Fellowship is also launching Albinism Awareness Week, which runs from Monday 9th � Friday 13th July 2012.
The aims of the week are to:
- Raise positive awareness of albinism through the media and improve the public's understanding of the condition
- Kick start a period of fundraising to support our work especially in organising events to bring people affected by albinism together
During Albinism Awareness Week, expect to see some coverage of albinism and AF in the press and media. Keep an eye on this page for details of the coverage we have achieved.
As part of Albinism Awareness Week, we are launching the 'BIG Difference' fundraising push, encouraging members and supports to help raise funds towards the conference and other upcoming events.
For more information about Albinism Awareness Week and how you can help with fundraising, please see the Albinism Awareness Week page.
18th June 2012 - Report from Dublin Albinism Day & BBQ
Treasa O'Callaghan reports:
We had an enjoyable & successful day at the BBQ & information family day on the 9th June 2012 at St John�s GAA clubhouse, Ballinteer, Dublin 16. There were around sixty people of all ages present at the event. It was lovely to meet the usual people again & also great to welcome some newcomers.
A big thank you to Tom Cosgrove & to Betty McCarthy who cooked the BBQ for everyone yet again this year! It leaves people free to chat & to supervise their children. Thank you also to Rosaleen Dempsey, contact person for Northern Ireland who gave her support. Georgina Brennan & Gearoid O Callaghan also helped out at the event. I had a number of leaflets & books on albinism on display e.g Real Lives. People who did not join the Albinism Fellowship on the day can do so by downloading a form from the Membership Page. You can pay in euro & need not convert to sterling. It is advisable to join soon before the conference in September.
People commented on the day that they benefit from having different age groups present as information & experiences can be shared. It is also beneficial for siblings to meet other families in similar circumstances. People tend to relax and make new friends . At the conference of course we will have a cr�che as it is a much longer day with various activities.
Professor Michael O Keeffe was most interesting to listen to. As usual he answered quite interesting questions very well keeping facts simple for people to understand. One can sense his interest and enthusiasm. We are grateful to him for giving up his Saturday afternoon in order to give us up to date information on albinism. Most people present were eager to learn how albinism affects people�s vision, different types identified, the advances made to date, the genetics and also the advances made in technology in order to improve vision. Professor O Keeffe ended on a positive note stating that albinism can be dealt with and that most people he has come across with the condition do very well in their achievements. New parents in particular found this news very uplifting.
We now have the conference to look forward to on the 29th September and it will indeed be a very exciting and informative event.
28th May 2012 - Report from Connect Albinism Event in Belfast
On 26th May 2012 Rosaleen Dempsey held a Connect Albinism Information Day in the offices of the parent's charity Angel Eyes NI (see www.angeleyesni.org), beside the River Lagan on the Ravenhill Road, Belfast. Around 50 people attended the event, many of whom were new and some who had attended previous information days.
Natasha Healey, Research Optometrist, presented her findings from the Northern Ireland Nystagmus and Albinism (NINA) study. There were some really interesting findings and we hope to hear more from Natasha soon. Sara McCracken, founder of Angel Eyes NI spoke about the Charity's ongoing work supporting parents of blind and partially sighted children since they were founded in 2007. These talks were followed by Harry Reid's engaging and hands on presentation on using iPads with low vision and a personal story from award winning Alpine Ski Racer Kelly Gallagher who is part of the British Disabled Ski Team and her mother Margaret, who spoke of her experiences of finding out that Kelly had albinism and how they moved forward in such a positive way. Kelly assured parents that her Albinism had not held her back in the sport and that it was important for children to get a chance to try various sports to see what suited them best. Everyone wanted to go skiing after that!
The day held a clear and positive message that Albinism need not be a barrier to achievement and the older children and adults with Albinism who attended conveyed this very well to the families. "Over the Moon" Children's Entertainment provided some excellent arts and crafts activities for children (and some adults too!) including balloon modelling, glitter tattoos and mask making.
Sincere thanks to all the speakers who spoke so well on the day, to Liz Quinn from Bryson Lagansports who provided the room and refreshments as well as being so helpful and welcoming to the group, to Angel Eyes NI who hosted us and helped to promote the day to parents and to RNIB NI for funding the event. Also thanks to Treasa O'Callaghan, AF Contact Person for the Republic of Ireland for travelling up to Belfast to support it and to our AF Member and volunteer Paula Meenan for her help on the day.
19th May 2012 - Fundraising News
We have been advised that GP Ian Seymour is no longer able to run in the Sheffield Half Marathon next weekend to raise funds for AF.
Instead he will be taking part in the Great North Run. Details of how to support him will be posted here when available.
19th May 2012 - 'Albino Pirate' character in 'Pirates' film.
Just a warning for any parents considering taking a child with albinism to see the 'Pirates in an Adventure with Scientists' film.
The film features a character referred to as 'Albino Pirate', who displays many of the stereotypically inaccurate features of a person with albinism (red eyes etc).
Parents may want to consider in advance whether the film is suitable, and might want prepare to deal with any questions and issues that might arise.
18th April 2012 - Report from Emilie Conway concert in Dublin
Emilie Conway had a full house at her concert in The National Concert Hall, Dublin. Fourteen of her friends and associates from Albinism Fellowship bought tickets. Unfortunately not everyone got in on the night and Emilie apologizes to those people who did not succeed in getting a ticket.
There was a great buzz on the night and it was exciting meeting people an hour before the concert at The John Field Room. It was good to catch up with each other. We marveled at the stunning posters of Emilie on display while we looked forward to a good night of entertainment.
Emilie looked stunning in a long jade dress. She & her three man band gave a brilliant performance. What a finale to their tour- a standing ovation and a sell-out! The cd was on sale on the night. People can still buy the cd in hmv, Grafton St, in tower records, Wicklow St or order off the website at www.emilieconway.ie.
Those of us who did not have to rush home after the concert went for a drink afterwards to Houricans in Leeson St where we relaxed and chatted.
The album received four stars and a nice review in Sunday Business Post. Lyric and RTE Radio stations around country have been playing it. Gay Byrne also gave a good plug and played one of the tracks.
We wish Emilie and her band continued success with their music. Hopefully we will meet her at the BBQ & Family Day on June 9th in Dublin.
24th March 2012 - Fundraising News
General Practitioner Ian Seymour from Sheffield is running in the Sheffield Half Marathon on Sunday May 27th in support of the Albinism Fellowship.
Ian said: �I have been running for just over a year and this is my first half marathon. I�m proud to be raising funds for the Fellowship in recognition of the great work they do to support and encourage people affected by Albinism�
If you want to find out more or make a donation please visit Ian's JustGiving page.
25th February 2012 - Patron for the AF?
The Albinism Fellowship is looking for a patron to help raise the profile of the organisation and possibly unlock additional fundraising opportunities.
Ideally we want a celebrity or respected professional who has an interest in or connection to albinism and/or visual impairment.
If anyone can suggest someone who might be worth approaching for this role, please do get in touch at email@example.com.
4th February 2012 - Autumn Albinism Life magazine
Unfortunately, due to production problems, we have been unable to publish an Autumn 2011 edition of Albinism Life magazine.
Although we had all of the content ready, we faced a severe escalation of our costs just before publication, which meant that the current production method no longer offered value-for-money.
The trustees have consequently decided to source production in a different manner, which requires us to take on more of the responsibility ourselves. This will save the AF money but requires time to learn the software packages required for layout and design.
All of the content from the Autumn issue will be included in a 'bumper' Spring issue, which will be arriving with members around Easter. Normal service should be resumed thereafter.
We know that our members greatly appreciate the magazine, and we're very sorry for any disappointment that this delay brings.
We are still looking for contributions for the Spring issue, so if you have an inspiring story, a product to review, or just something you want to say about living with albinism, please do get in touch at firstname.lastname@example.org. Even if you only have an outline, we'd be happy to help you turn it into an article.
17th January 2012
Many of you will know of AF member Jane Klemen from her albinism research work at Cardiff University. Jane is now taking 6 months off work to train for an ultra-endurance Ironman race and to fundraise for Cancer Research UK.
She will train twice a day, 6 days a week, for 6 months to complete:
- A 3.8km open water swim...the equivalent of 152 laps of a pool!
- A 180km bike ride with 1600m climb...the distance from Reading to Cardiff, with hills!
- A full marathon, yes, a 42.2km run!
She will have to finish all of this within 17 hours on race day, 1st July.
Jane will be keeping us up to date with her progress through Albinism Life magazine and we look forward to hearing how she tackles any additional challenges that being a person with albinism presents during the training and the race itself.
If you'd like to help Jane reach her goal of raising enough money for Cancer Research UK to fund a PhD student's work for a full month, please visit her fundraising page at www.donatetobreastcancer.org/janeklemen.
17th December 2011 - Be Mine This Christmas
'Be Mine This Christmas' is the RNIB's charity Christmas single. It is written and performed by Jason Noble, who has albinism, and also features the RNIB choir.
RNIB will benefit from proceeds made from the single, which is available for purchase from iTunes.
You can also watch the video on YouTube.
17th December 2011 - Optimum VI Project
Great Ormond Street Hospital and UCL Institute of Child Health are currently running a major national study, investigating early development and intervention in babies and young children with severe visual impairment.
Between now and the end of December 2012, the research team (led by Dr Naomi Dale and Dr Alison Salt) are looking to recruit infants aged 0 to 15 months with severe to profound visual impairment to take part in the study.
If any families who have a child with albinism are interested in taking part, please contact the Research Associates: Dr. Elena Sakkalou or Dr. Michelle O�Reilly on 020 7599 4124 or email email@example.com, firstname.lastname@example.org.
4th December 2011 - Report from the Christmas Social & AGM
The Albinism Fellowship Christmas Social & AGM took place on Saturday 3rd December at the PCS Union HQ in London. Around 60 people attended the event and it was great to see some new faces.
While the children were entertained with party games, the Annual General Meeting took place.
Martin Lang read out the Chair's Report, outlining the activities of the Fellowship over the last year and our plans for the coming year.
Mark Sanderson went through the accounts for 2010/2011 (available for download below) and the existing trustees were re-elected for a further year. We are also pleased to welcome Joanne Bennett to the board of trustees.
After the AGM, each of the children was taken by one of our 'elves' to go and see Santa, who'd kindly taken time out of his busy schedule to pop by and give the children some gifts.
We hope everyone enjoyed the event, thanks to everyone for coming along.
Special thanks must go to Kevin, Janice and Andrea for all their hard work organising it and to the PCS Union who generously allowed us to use their conference rooms at significantly less than the commercial rate.
Thanks to Scott Robinson for the photos.
2nd December 2011 - Annual Report & Accounts
The Albinism Fellowship's 2011 Annual Report and the accounts for 2010/2011 are now available for download below.
Albinism Fellowship Annual Report 2011 (MS Word)
Chair's report from 2011 AGM (MS Word)
13th November 2011 - Report from Derry Information Day
A successful Connect Albinism Information Day took place in Derry/Londonderry on 12th November 2011. 35 children, young people and adults with albinism and their families had the opportunity to meet others with the condition and to listen and participate in informative talks.
Natasha Healey, Research Optometrist at the University of Ulster spoke about the genetics of Albinism and how it affects the eye and vision. She also updated us on the NI Nystagmus and Albinism Study.
Stephen Porter, an Officer of the North Eastern Education & Library Board told us about his experience of living with Albinism and the work that he does.
Low vision product demonstrations were provided by RNIB NI Resource Centre staff Louise Neeson and Joanne Williams, while a balloon modeller from "Over The Moon" children's entertainment kept the little ones (and the big ones in some cases) entertained.
Many thanks to all who made this event such a success.
9th October 2011 - Report from Belfast Information Day
The annual Belfast Information day took place on 8th October. The programme included very interesting talks about albinism, low vision and research from optometrists Natasha Healey and Moyra McClure Stephen Porter, Vision Support Teacher in the NI Regional Vision Resource Base told his story of growing up with albinism and his work to date.
Last but certainly not least was a tour of the RNIB Belfast Resource Centre and a balloon modeller from Over The Moon Children's Entertainment.
Many thanks to all who made the event so enjoyable; the speakers, RNIB staff and volunteers and parents from Angel Eyes NI.
27th September 2011 - National Eye Institute research into possible treatment for OCA1B
A recent article in the Journal of Clinical Investigation highlights some interesting research that has the potential to lead to treatments for some people with albinism. (BBC News Story).
Scientists at the National Eye Institute, Maryland, were investigating a drug called nitisinone (which is already licensed for use to treat a blood condition) and found that it could increase the pigment levels of mice who had a form of Oculocutaneous Albinism (OCA1B). They have suggested that the same drug might be used to increase pigmentation in people with albinism and as a result, improve their vision.
These results are encouraging, and it is good to see that there are groups actively researching albinism and possible treatments. However, it is important to understand that this is not a cure for albinism, and there are still some major issues:
Firstly, this treatment only appears to work on one type of Oculocutaneous Albinism, OCA1B (where some pigment is already present). It did not appear to have any affect on mice with OCA1A (where no pigment is present).
Also, as most visual development occurs in the womb, or at a very young age, the greatest benefits are likely to be to infants, whose sight is still developing. However, it might be able to reduce photophobia in adults, which could result in improved vision and less sensitivity to glare.
Needless to say, we will be keeping a close eye on progress.
13th September 2011 - The White Noise Show 4
Sara and Kristina are back with the September edition of The White Noise Show:
In this edition, they talk guide dogs and canes, having your hair cut and recognising friends and randoms..... Plus the usual quiz and news features.
Check it out at the www.thewhitenoiseshow.com.
17th August 2011 - QAC Sight Village - Manchester & London
QAC Sight Village is an exhibition showcasing products and services for people with visual impairments.
There are two upcoming Sight Village eventsl at the Renaissance Hotel, Manchester on Tues 27 Sept and Kensington Town Hall, London on Tues 1st & Wed 2nd November. Admission is free.
For full details, see www.qacsightvillage.org.uk.
15th August 2011
We have received the following requests from 'betty', a TV production company who are looking for people with disabilities to take part in a documentary about relationships and the search for love:
Are you looking for love? Would you like to meet the person of your dreams? Do you have a physical, sensory or other impairment, or a long term condition?
Here at �betty� we�re making a highly romantic, up-beat & insightful observational documentary series for Channel 4 which will follow disabled people and those with a variety of conditions in the highs and lows of their quest to find love. We very much hope to be able to film some happy endings. The intention is also to explore and challenge some of the barriers, issues and prejudices that are faced.
An existing personal introduction agency, taking advice when necessary from experts in disability and other conditions, will be matching people on common interests, likes and dislikes. The agency is fully inclusive, with both disabled and non-disabled people on its books.
If you would like the chance to meet your match and are interested in taking part get in touch with us on 020 7907 0863 or 07503 805614 or email@example.com
�betty� is a highly respected, leading TV company, read more about us at www.betty.co.uk. We�re working with a number of organisations, including leading disability networks and charities on the series idea to ensure it�s handled sensitively.
9th August 2011 - The White Noise Show 3
Sara and Kristina are back with another episode of The White Noise Show:
This month. Sara is talking about "Pigmenting yourself up". We have another fantastic quiz, "How Albino are you?" and Kristina talks about the sheer hideousness of photobooths and what do you do if you see another person with albinism?
Check it out at the www.thewhitenoiseshow.com.
6th August 2011 - Participants required for albinism research
Dr Jane Klemen from Cardiff University is currently carrying out research into albinism, and is looking for people with albinism who would be willing to take part in the study.
The testing will take place in Cardiff, and involves measurement of eye movements and EEGs from the surface of the head. There are no brain scans so everyone with albinism can take part.
Travel expenses will be covered, so it is also a good opportunity to visit Cardiff if you've never been before.
If you would like to take part, or would like to find out more, please contact Jane at firstname.lastname@example.org. You can also find out more about Jane and her work here.
26th June 2011 - Dublin BBQ Report
The 2011 Dublin Albinism Day & BBQ took place on Saturday 18th June at the St. John's GAA Clubhouse in Ballinteer.
Everyone seemed to have enjoyed the day. People mixed a lot & commented on the nice atmosphere. Children had fun with the sports equipment, paper & crayons. Unfortunately, as it was a rather showery day, it wasn't possible to bring the parachute out to the park.
A big thank you to Betty McCarthy and Tom Cosgrove who cooked the burgers and prepared lovely salads, thanks also to everyone who brought yummy cakes.
14th June 2011 - London BBQ Report
The 2011 London BBQ took place on Saturday 4th June at the usual venue in Southgate.
The weather was dry but not too hot; perfect for the children enjoying themselves out in the playground while parents took the opportunity to chat and share experiences.
Turnout was excellent, with over 70 people attending, including several families who had never attended an AF event before.
During the afternoon, we were treated to a double-bass performance from Ozan, who also demonstrated his electronic music stand, which allows him to enlarge sheet music.
Many thanks to everyone who attended and all of the volunteers who helped in making it such a great day.
6th June 2011 - Connect Albinism Weekend
The Connect Albinism Family Weekend took place at the Share Centre, Lisnaskea, Co. Fermanagh in May. Nine families attended the weekend and took part in the programme, which included climbing and arts and crafts for the children as well as an information session for parents.
Families had a chance to use the Share Leisure complex facilities and to see the RNIB chalet, which is available to blind and partially sighted people and their families.
Many thanks to all the volunteers who helped to make the weekend such a success as well as the parents and children who attended. The weekend was made possible by funding from BBC Children in Need.
1st June 2011 - The White Noise Show 2
Kristina and Sara have just released The White Noise Show #2: Eye tests, pigment pills and Father Christmas.
In this month's show, Kristina talks about Eye tests and being "done out of visioni" and the "issues" of reading in public. Sara compiles a Top 10 of "Names not to call somebody with Albinism". They also chat about what they would say to their sixteen year old selves.
Check it out at the www.thewhitenoiseshow.com and follow them on Twitter.
1st May 2011 - The White Noise Show
Our friends Sara and Kristina, who both have albinism, have just released the first episode of The White Noise Show, their new albinism podcast.
In this episode they discuss what they like to be called, how to deal with kids shouting abuse in the street, getting involved in sport and a round-up of albinism news.
Kristina also challenges Sara to an albinism quiz.
Check it out at the www.thewhitenoiseshow.com and follow them on Twitter.
15th April 2011 - Nystagmus Network Open Day
The Nystagmus Network will be holding an open day on Saturday October 22nd in North-west London.
The open day provides an opportunity to learn more about nystagmus (a common symptom of albinism), find out about research, and meet other people affected by this eye condition.
For more information, see the Nystagmus Network website or contact John Sanders, NN development manager (Tel: 0845 634 2630. Email: email@example.com).
27th March 2011 - NBCS - Team Around the Family Roadshow - London
The National Blind Childrens Society is hosting free a 'Team around the Family Roadshow' in London on 12th April.
An Educational Advocate will be available at the event for consultation along with members of the NBCS family support and Access Technology teams. Numbers are limited so booking is essential.
For further information and to book, please see the event information on the NBCS website.
26th Jan 2011 - Do you use eBooks?
Royal National Institute of Blind People (RNIB) is seeking users of eBooks who are blind or partially sighted to participate in the creation of a DVD to demonstrate eBooks. The DVD will not only look at the various features of this new medium, but will also look at the advantages and disadvantages of eBooks and eBook readers in order to evaluate how accessible they are.
If you have something to share and are not camera shy, please get in touch as we would love to hear from you.
For more information or if you have any questions, please contact: firstname.lastname@example.org.
24th Jan 2011 - LifeTech Video Podcast - Doro 332, Kindle 3 and BigNames for iPhone
In the latest edition of our LifeTech technology podcast, Robin Spinks looks at the Doro 332 accessible mobile phone, the Amazon Kindle 3 e-book reader and the BigNames app for the iPhone.
20th January - 'The Hour' interview
Gemma Sherry & Robin Spinks were interviewed about albinism on STV's 'The Hour' on 12th January.
It is now available to watch online on the STV Player for 30 days. Robin and Gemma are on at the start of part 3.
5th December - Report from Christmas Party & AGM
The Albinism Fellowship held its Christmas Party and AGM on Saturday 4th December at Caversham Heights, near Reading.
Despite the ice and snow, there was a good turnout, and everyone had a great time catching up with old friends and making new ones.
The children were entertained by Billy Bonkers (who is very adept at producing fashionable balloon-based headgear) and got to tuck into some party food, while the adults had a chance to chat over warm mince pies and 'seasonal punch'.
During the afternoon, the Albinism Fellowship's AGM was held and the existing trustees and officers were re-elected. Will Fellows, who was co-opted during the year, was also elected to the board.
We still have up to two Trustee vacancies; expressions of interest should be sent to Martin Lang (AF Chair) at: email@example.com or by phone: 01282 771900 by the end of December.
The AF's Annual Report and Accounts will be published on this website once they have been finalised.
Many thanks to Lorna Stacey for organising the event, to everyone who helped out, and all those who braved the weather to come along. We would also like to thank the Lions Club of Reading for their generous support towards the costs.
27th November - Report from Connect Albinism Event in Derry
A very successful Connect Albinism Information day took place in the RNIB Strand Road Office, L/Derry on Saturday 20th November. It was hosted by RNIB NI and the Albinism Fellowship (UK & Ireland). Approximately 40 people attended the event from Northern Ireland and the Republic of Ireland. There were families of new babies recently diagnosed with albinism and adults with albinism present.
Natasha Healey, Research Optometrist at the University of Ulster spoke about Albinism and her work on the NINA Study (NI Nystagmus & Albinism Study). Marian Lewis of National Council for the Blind of Ireland spoke to the group about the Sensory Engagement Project (a cross border project made up of the leading charities for people with vision or hearing problems in the North and South of Ireland). Rosaleen Dempsey provided an RNIB and Albinism Fellowship update and finally Laura Mccauley told her story of growing up with albinism. We also had RNIB products on display with demonstrations from Martina O'Neill and Tony Kelly. Many thanks to everyone who helped to make the day so enjoyable.
22nd November - Albinism Fellowship Annual General Meeting
As previously advertised, the Annual General Meeting of Albinism Fellowship (AF) will be held at Caversham Heights Methodist Church, Caversham, Reading on Saturday 4th December 2010 at 3pm at which there will also be a children's Christmas party starting at 2pm.
Full details can be found on the Events Page.
The agenda for the AGM will be:
1. Minutes of and matters arising from the 2009 AGM
2. Chairman's Report for 2010
3. Overview of Financial Statement for 2009-10
4. Election of Trustees and Office Bearers
5. Appointment of Auditors
Members are reminded that any proposed resolutions (changes to the constitution (the rules) / governing document of AF) must be notified to the Chair in advance of the meeting. Any resolution would need to be supported by two thirds of members present to be approved. The constitution will shortly be available on this website.
The Chair intends to propose that the following trustees be elected to serve for another year as follows:
Also, that Will Fellows, who has been co-opted by the trustees during the year following an invitation for new trustees be elected to the committee.
Furthermore, that the officers of the charity shall be:
Chair, Martin Lang
Vice-Chair, Robin Spinks
Treasurer, Mark Sanderson
Secretary, Hilary Hill
The Chair will announce that there is one vacancy on the committee and will invite expressions of interest in the vacancy to be sent to him by 31st December 2010. Although there is one vacancy according to the constitution, the Chair reserves the right to appoint up to two persons to support succession planning.
He can be contacted at: firstname.lastname@example.org or by phone: 01282 771900.
Trustees must be members of AF and expressions of interest should include a CV if possible and a statement (no more than two sides of A4) as to how candidates believe they could contribute to the trustee board. Suitable candidates will be short-listed and invited to an interview process in the new-year.
Members wishing to attend the AGM & Children's Party are reminded that this is a pre-bookable event (to enable us to arrange children's entertainment, party food & other refreshments) and that they can book by contacting:
Phone: 07919 033 853 (Please leave a message if not answered)
By Friday 26th November
Lorna needs to know your name, the number of people in your party including children, and children's ages. All bookings must be received by Friday 26th November which is an extended deadline.
8th October - Vision Zone exhibition in Northern Ireland
The Albinism Fellowship will have a stand at Vision Zone, an exhibition of resources, equipment and services for blind and partially sighted people. It is sponsored and organised by OPTELEC
Tuesday 9th November in Grosvenor House, Glangall St, Belfast - 11am-4pm
Wednesday 10th November in Grosvenor House, Glangall St, Belfast - 10am-3pm
Thursday 11th November in the Millennium Forum, Newmarket Street, L/Derry - 10am-3pm
7th September 2010 - Contributions to Albinism Life
We are in the process of putting together our next Albinism Life magazine.
Have you got anything you would like to share? We are especially interested in articles with photographs.
We will write/edit and generally help with your story if needed.
So if you have been stepping out of that circle or your children have, been fundraising, big story or little story - we want to know!
Send them in to email@example.com and we'll get it into print.
5th September 2010 - "This Is Me � The White Rose" on RT� Player
Viewers in Ireland can now watch last Friday's 'This is Me' online using RT� Player. Click here to view
27th August 2010 - "This Is Me � The White Rose" on RT� Television
This Friday's episode of RT�'s documentary series, 'This is Me' focuses on Lynda Ward, an 18 year old with albinism, and her experiences of living with the condition.
The episode will be broadcast on Friday Sept 3 at 7.30pm in on RT� One (available in the Republic of Ireland and Northern Ireland).
For more information, see the RT� website.
19th July 2010 - Five Shires Event Report
A very successful event was held in Moreton in Marsh on 10th July. We shared the afternoon with friends and families of all ages and were pleased to welcome some adults and babies who are relatively new to the Fellowship.
The afternoon opened with an introduction from a small group of musicians playing flute, saxophone, clarinet and cornet, proving albinism is no barrier to learning music, even though it takes a little more organisation. We had a talk from Sue Bryant, local advisory teacher for visual impairment, which explained their role and how they can be accessed.
After a short break for tea and cake, Mark Sanderson (Albinism Fellowship treasurer) gave an interesting account of his life with Albinism, explaining the challenges and successes he has experienced. He described ways of dealing with some unhelpful situations and how the ability to be good humoured and positive can often help. Chris Fenlon from the Hermansky Pudlak Syndrome Network brought lots of related information and was available for advice. As always, the informal time together allowed us all to share information, advice and experiences, get to know each other better and form new friendships.
Huge thanks to SpecSavers, Stratford upon Avon for sponsoring this event. Thanks also go to Daniel Hill for managing the Facebook page and Hilary Hill for her behind the scenes work in contacting the members. Both speakers were excellent, we appreciate their time and work in preparation for these events. Sorry to miss those people who could not make it this time, maybe next time!
14th June 2010 - Dublin BBQ Report
The Dublin BBQ took place on 12th June at St. Johns GAA club, Ballinteer. Around 30 people attended the event including adults and children with albinism and their families. The BBQ was provided by members of the club and everyone enjoyed the food.
Joan Curran, Educational Psychologist with much experience of working with children with sight loss was available to advise families.
Musician Emilie Conway spoke about her experiences of growing up with albinism and her career in music. She played and sang some songs throughout her story. An extremely talented singer; she was asked for encores!
All in all an extremely enjoyable day. Many thanks to the members of St John's GAA for the food and support and of course to Treasa O'Callaghan for her organisation of this event.
Some of the beautiful paintings brought along by guest speaker Emilie Conway. You can find out more about Emilie and hear some of her music at her website: www.emilieconway.ie
9th June 2010 - London & Belfast Events
The London Summer BBQ was held at the usual venue on Saturday 5th June. The event was a great success, with a high turnout, including many people who had never attended an AF event before. Fortunately the weather stayed sunny and warm for most of the day, allowing the younger children to take advantage of the school playground and field, while the adults got to relax, socialise and share experiences.
The short meeting provided an opportunity to catch up with Albinism Fellowship activities and to discuss pieces of technology that people with albinism find useful. Hopefully we will get a chance to explore some of these more thoroughly in future LifeTech podcasts.
Many thanks to Helen, Karen and everyone else who made this such a success. We'd also like to thank all of the individuals and companies who donated prizes for the raffle, which raised a significant amount of money for the Fellowship.
Despite the good weather approximately thirty people joined us in the RNIB Belfast office for the annual Albinism Information day.
Parents listened to talks from various speakers including Louise Neeson, RNIB Resource Centre supervisor, who recently won a prestigious Department of Employment and Learning "Apprentice of the Year" award. Louise has albinism.
Robin Spinks gave an update on Albinism Fellowship activity and demonstrated the Apple iPad.
This was followed by lunch and a tour of the RNIB Resource Centre .
Finally Niall Dempsey and Paula Meenan informed parents about the RNIB youth projects 'Vision 4 Life' and 'Eye Matter'.
Many parents commented that the best part of the event was hearing from adults with albinism while the children enjoyed the toys and games.
Many thanks to Louise, Niall, Paula and Andrea for helping to make the event such a success.
26th May 2010 - LifeTech Video Podcast - Apple iPad
In the second edition of our LifeTech technology podcast, Robin Spinks takes a first look at the Apple iPad, from the perspective of a person with a visual impairment.
The iPad's large, clear display, onboard zoom feature and pinch-to-zoom browsing make it very accessible.
22nd May 2010 - 'The Whitest Minority' documentary
Produced by students from the University of Bradford; 'The Whitest Minority' is a 30-minute documentary about the lives of four people with albinism living in the UK.
The documentary is now available to view online.
18th May 2010 - Caroline Casey interview on RT�'s 'Late Late Show'
Caroline Casey is a renowned social entrepreneur, international speaker and all round adventurer who also has ocular albinism.
Caroline gave a great interview on RT� Television's 'The Late Late Show' on Friday 7th May, which is now available to watch online.
14th April 2010 - Sight Village Ireland
The Albinism Fellowship will be exhibiting at QAC Sight Village Ireland, an event showcasing technology, support and services for people who are blind or visually impaired.
Sight Village Ireland will take place at two venues:
The Oriel Hotel in Cork on May 11 & 12 2010
The Burlington Hotel Dublin on May 14 & 15 2010
For full details of the event, see the QAC Sight Village website.
23rd February 2010 - Dream BIG and It's Time 2009 feedback
Many thanks to everyone who took the time to fill in the It's Time 2009 conference evaluation form and participate in the 'Dream BIG' session and questionnaire.
The conference evaluation report and summary of responses to 'Dream BIG' are now available to download below.
The trustees will use both to help inform the Fellowship's direction over the next two years and aid in planning the next conference. We will keep you all updated with our plans via this website and Albinism Life magazine.
10th February 2010 - Membership Renewal Reminder
This is a gentle reminder that yearly subscriptions are now due for the Albinism Fellowship.
The subs are still only �15 per year which helps cover the cost of your Albinism Life Magazine and some of our administration costs for mailings etc.
Please see the Membership Page for information on joining the AF or renewing your membership.
We are now offering the option of paying online using JustGiving. If you pay using this method, please e-mail firstname.lastname@example.org to let us know, and remember to select the 'Gift Aid' option if you are a UK taxpayer.
Note that anyone who joined the AF between October 2009 and December 2009 gets the next year's membership free, so no need to renew.
5th February 2010 - LifeTech Video Podcast
LifeTech is a new experimental video podcast from the Albinism Fellowship. In each edition, we will be looking at a selection of 'gadgets' and the accessibility features that they provide for people with albinism or other low vision conditions.
In the first edition, Robin Spinks examines the accessibility features of three modern smartphones; the Blackberry Bold 9000, Samsung S8000 Jet and the Apple iPhone 3GS.
Robin also takes a look at the iMagnify application for the iPhone 3GS, which uses the phone's camera to turn it into a portable magnifier.
For more information on the phones and detailed technical specifications, visit the manufacturers' websites:
If you have any comments on the podcast, or would like us to feature a particular gadget in a future edition, please get in touch.
21st January 2010 - Too White To Be Black on iPlayer
For anyone who missed the broadcast of 'Too White To Be Black' on Tuesday, you can listen to it on BBC iPlayer until Tuesday 26th Jan.
18th January 2010 - BBC Radio 4 Documentary
'Too White To Be Black', Kim Normanton's radio documentary about people with albinism, airs on BBC Radio 4 tomorrow (Tuesday 19th Jan) at 16:00. Be sure to check it out.
For more information, see the programme's page on the BBC website.
6th January 2010 - NB Magazine article on albinism
NB Magazine is produced by the RNIB for sight loss and eye care professionals.
The December edition contained an article on albinism, which the Fellowship has kindly been given permission to make available for download. To download, click the link below.
For more information on NB Magazine, please see www.rnib.org.uk/nbmagazine.
NB Magazine Article (Adobe PDF Format)
5th December 2009 - Your chance to participate in a documentary on albinism
We have received the following request from Marina Selega, a student at the University of Bradford, who is producing a documentary on albinism:
We are students from the University of Bradford, who intend to produce a 30 minute documentary on the subject of Albinism, which we mean to examine through individuals and from information provided by experts. The documentary objective is to raise positive awareness about albinism, by using very personal level through the contributors, whilst remaining educational.
We would like for 3 contributors, who are comfortable with the intrusion, to share their stories on camera, for a couple of days. Preferably we would like to interview contributors with both OCA (Oculocutaneous Albinism) and OA (Ocular Albinism), as well as those from a non-white ethnicity with albinism. Age and location of contributors does not concern us, as we are able to travel to these contributors, but we would prefer it if they were living in Yorkshire or London.
Filming will take place in February and March of next year, with screenings of the documentary occurring sometime in May. We would appreciate any contribution or help that can be provided.
Marina Selega (Producer)
22nd November 2009 - New Albinism Fellowship website launched
Delegates at It's Time 2009 will have seen a sneak peak of the fellowship's website, and it is now generally available here at www.albinism.org.uk
We intend to keep expanding and improving the website, and any comments and suggestions will be much appreciated.
Also, we are always looking for people to write articles for the website, or contribute a personal story about their experience of albinism.
If you would like to submit something, please get in touch.
16th November 2009 - BBC Radio 4 documentary on albinism
Kim Normanton has been commissioned to make a documentary for BBC Radio 4 and will be joining us at our forthcoming conference. Here is a bit of background on Kim:
Kim Normanton is an award-winning producer and Director of Loftus. She joined the BBC's production trainee scheme in 1989 and worked on various magazine programmes- Woman's Hour, You & Yours and Loose Ends. She worked as a staff producer on BBC Radio 5 before going freelance.
Kim likes to share with a wider audience the inspiring stories of people not often heard on radio. She's known for her montage style of programming which allows people to tell their own story. Collaborations with Nigel Acheson include Second Time Around (2007), Black, Muslim and Gay (2004), She's Alright, My Mum Is (Gold Prize, Third Coast Festival, Chicago 2004), It's All Down to Ben (Winner, best foreign programme, Premios Ondas, Barcelona 2004. Recent programmes with Elizabeth Burke include Merry Widows (2009) Clearing The House (2008) and Advice To The Living (2008).
A gifted interviewer and compiler, she has produced innumerable feature programmes for Radio 4 over the past 20 years. She�s fascinated by storytelling and has produced several programmes on the subject which include storytellers from various cultural backgrounds such as If The Slipper Fits a montage of Cinderella stories told in different parts of the world.
29th October 2009 - Albinism family weekend in Northern Ireland
The Share Centre, Lisnaskea, Co. Fermanagh provided the venue for a great family weekend from 11-13 September 2009. Blessed with a lovely clear sunny sky, seven families and five volunteers came together to share their experiences and to learn more about albinism. Activities included T-shirt painting, creative arts and indoor and outdoor climbing.
While the kids enjoyed the activities, parents took part in discussions and attended information sessions on RNIB services, Albinism Fellowship updates and various unique personal insights. Feedback from all was very positive and our thoughts are now focused on a similar event next year.
Thanks to BBC Children in Need for financing the weekend, RNIB Northern Ireland and Albinism Fellowship trustees and volunteers.
29th October 2009 - Ofcom 2009 review of access services
Do you want more audio description on TV? The time to act is now! Ofcom have launched the 2009 "Access services review". This includes a review of levels of audio description with an option to increase audio description to 20 per cent across all channels. This is a major opportunity to improve the accessibility of TV programmes for thousands of blind and partially sighted people. Please respond to Ofcom outlining why you benefit from AD and why we need more!
This consultation is open until 5pm on November 12th 2009. See the Ofcom Access Review page on the RNIB Website for details.
2nd September 2009 - AF Members' Discount at Sunsibility
SunSibility, suppliers of UV protective clothing, sunscreen and other UV protection products, are generously offering a 10% discount to members of the Albinism Fellowship.
To take advantage of this offer, place an order on the SunSibility Website, and enter the discount code 'ALBINISM' at the checkout.
26th March 2009 - Annual Report and Accounts 2008
The Albinism Fellowship's Annual Report and Accounts for 2008 is now available for download.
18th March 2009
The Albinism Fellowship has met with photographer John Ferguson, who has asked us to pass on the following request.
John can be contacted through his website (linked below):
Hi my name is John Ferguson and I'm a professional portrait photographer working in London & the UK. I've been approached by a leading Museum to put together a exhibition surrounding the subject of Beauty, Culture and Race. So I've decided to concentrate my project on the issue of Type 1 Albinism. I have already started the project, which is looking great, and will be photographing Big Brother's Darnell as my next subject.
I am looking for more subjects who are willing to be photographed and be included in the final exhibition. I'm looking for people from every kind of background and race, I'm especially keen to find people of Chinese & Asia backgrounds plus people and children from all age groups. Also I finding it difficult tracking down albino siblings and Albino couples.
The exhibition will be more of a art base photographic project and sympathetic towards the your condition. With each portrait, every participant(or parent) will have to include a written insight on their condition and how their lives have been affected by Albinism.
You can view some of my work on my website, www.johnferguson.co.uk.
Thank you for your assistance.
3rd February 2009 - Your Story
What is your experience of living with albinism? Tell us about your thoughts, feelings and challenges of living with albinism in 2009.
As part of our ongoing media and advocacy work, we're keen to hear about peoples' experiences, good and bad.
Perhaps you could write a short piece for the web or for our next edition of Albinism Life? Maybe you'd be interested in taking part in our forthcoming Real Lives podcast?
If you'd like to share your story with us, drop us an email on email@example.com.
14th December 2008 -Albinism Fellowship Annual Event in Belfast
The event was held in the RNIB NI office in Belfast. Activities for children and young people were provided while parents were given the opportunity to talk and listen to presentations.
Natasha Healey, optometrist, presented on the NINA (Northern Ireland Nystagmus & Albinism) Project which will take place in the low vision clinic in the Royal Victoria Hospital, Belfast and will involve children with both eye conditions.
There was also an opportunity for participants to view and purchase products from the RNIB resource centre and the short film "Butterfly" about Gemma Sherry, a young person with albinism in Scotland was shown.
Many thanks to RNIB staff and volunteers for their support on the day.