News & Events

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 info@albinism.org.uk. Even if you only have an outline, we'd be happy to help you turn it into an article.

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.

'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.

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 e.sakkalou@ucl.ac.uk, m.oreilly@ucl.ac.uk.

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.

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)

Albinism Fellowship Accounts 2010/2011 (PDF)

Chair's report from 2011 AGM (MS Word)

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.

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.

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.

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.

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.

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 dating@betty.co.uk
‘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.

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.

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 klemenj@cardiff.ac.uk. You can also find out more about Jane and her work here.

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.

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.

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.

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.

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.

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: john.sanders@nystagmusnet.org).

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.

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: digitalaccess@rnib.org.uk.

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.

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.

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: info@albinism.org.uk 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.

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.

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:
Rosaleen Dempsey
Daniel Hill
Hilary Hill
Martin Lang
Mark Sanderson
Robin Spinks
Lorna Stacey

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: info@albinism.org.uk 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:

Lorna Stacey
E-mail: ljstacey@ntlworld.com
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.

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

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 info@albinism.org.uk and we'll get it into print.

Viewers in Ireland can now watch last Friday's 'This is Me' online using RTÉ Player. Click here to view

This Friday's episode of RTÉ'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 RTÉ One (available in the Republic of Ireland and Northern Ireland).

For more information, see the RTÉ website.

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!

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.

London

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.

Belfast

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.

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.

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.

Caroline Casey is a renowned social entrepreneur, international speaker and all round adventurer who also has ocular albinism.
Caroline gave a great interview on RTÉ Television's 'The Late Late Show' on Friday 7th May, which is now available to watch online.

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.

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.

It's Time 2009 - Evaluation Report - (MS Word), (PDF)

Albinism Fellowship Dream BIG
Summary of Responses - (MS Word), (PDF)

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 info@albinism.org.uk 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.

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.

Part 1

Part 2

For more information on the phones and detailed technical specifications, visit the manufacturers' websites:

Blackberry Bold 9000
Samsung S8000 Jet
Apple iPhone 3GS
iMagnify for the iPhone 3GS

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.

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.

'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.

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)

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.

Thank you,

Marina Selega (Producer)
E-mail: m_selega@yahoo.com.au

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.

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.

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.

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.

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.

The Albinism Fellowship's Annual Report and Accounts for 2008 is now available for download.

Download Annual Report & Accounts 2008 - (MS Word), (PDF)

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.
John Ferguson

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 media@albinism.org.uk.

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.