News & Events

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.jfphoto.co.uk, on my personal work page.

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.