Jac is running a 2.5k fun run this month to raise awareness of nystagmus and fundraise for the Nystagmus Network. His Mum and Dad didn’t find out Jac had nystagmus till he was 3 years old and always tell him he can do anything he wants. We’re sure Jac will achieve great things!
You can sponsor Jac’s run here.
Ella’s Mum tells us about her 16 year old daughter, Ella, who has nystagmus and optic nerve hypoplasia. She has also had to endure major surgery to straighten her spine, having discovered she was suffering from scoliosis.
“Ella is a singer/songwriter and at the end of last year won Leeds City Council Breeze has Talent, playing one of her original songs. One of her prizes was to sing at the Leeds Christmas Lights switch on in front of thousands of people. Ella has never let her visual impairment be a barrier for anything she has wanted to achieve. She is currently studying hard for her GCSEs and then hopes to go to Music College. She has also recently been in the recording studio and hopes to release her debut EP of her own songs in the not so distant future. The summer is going to be a very busy time for her, playing lots of local music festivals. We are naturally extremely proud of everything she has achieved and know that she will continue to make us proud in the future.”
Watch Ella play here.
The first Nystagmus Network Snow Camp of 2018 takes place this Sunday, 17 June, at Snozone Milton Keynes. Lots of families have signed up to enjoy a day of sledging and skiing alongside the famous Outspan Rebels VI ski team. Their chief coach, Charlotte Evans MBE, will be on hand with training hints and tips and internationally acclaimed photographer, David Katz will also be there.
Not only that – but we’ve just heard that Paralympic ski super duo, Menna Fitzpatrick and Jennifer Kehoe will be there! Menna and Jen won one gold, two silver and a bronze medal in the Pyeongchang Paralympics earlier this year. What better inspiration for our nystagmus skiers?
Read more about Menna and Jen here.
Here’s Vicki’s nystagmus success story …
I have congenital nystagmus and ocular albinism and want to help to encourage other people to reach their potential.
I graduated from Durham university with a degree in Maths and Physics. During the first couple of years of my degree, I refused the extra help I deserved due to my eye problem, because I wanted to fit in. I had extra time for my a levels and GCSEs but some comments from other pupils made me feel embarrassed. By the third year I realised that I was doing myself an injustice and some good friends persuaded me to take the extra time. Although I then got very good marks in third year I was disappointed with my overall degree grade. I hope other people learn from this – take the help you need.
After university I got a job in accountancy and studied for my ACA. I got extra time and progressed through my exams right to the last stage. I failed the last exam, which was a case study and involved a lot of reading and writing – with the extra time my exam was over 4 hours long, which was a long time to concentrate.
I quit my job and went travelling around the world on my own for 18 months. I visited 12 countries and did a mixture of paid work, volunteer work, tours and independent travelling. I absolutely loved it and it taught me that I could do anything I put my mind to – despite my wobbly eyes. I worked behind a bar (people struggled getting my attention, but there wasn’t another pub for 50 miles so they were persistent!), I worked on a wildlife sanctuary with lions and cheetahs and baboons, I built houses for poor people, learnt Spanish, learnt to scuba dive. … the list goes on.
I came back full of confidence in my abilities and decided to retake my case study exam. I passed this time and qualified as a chartered accountant. I now work for one of the largest accountancy firms in the world in a job I love.
It’s been a bumpy ride of learning from my mistakes, but I now realise that my eye problem will only hold me back if I let it.
Ben’s Mum tells us:
“I am incredibly proud of my son, Ben who is 10 and has nystagmus. He plays for the under 10s Winslow Tigers football team. Recently he scored a hat trick and received the Man of the Match Trophy. He has to work twice as hard as his friends, as he hasn’t quite mastered contact lenses and doesn’t want to wear sports goggles.
We never imagined he would ever experience being part of a sports team, but not only is he a great team player, he also has great skill.”
We join our sister charity, Albinism Fellowship UK, today in celebrating Albinism Awareness Day, with a special guest blog post from AFUK Chair, Roselle Potts.
Help us to raise positive awareness on our international campaign day
June 13th is an important date for people with albinism everywhere. It’s International Albinism Awareness Day, when people with albinism celebrate together and raise the positive profile of this rare and widely misunderstood condition.
The United Nations has officially recognised International Albinism Awareness Day as a global event since 2015, following a resolution adopted by its General Assembly in 2014.
While we’re seeing progress in gaining a greater understanding of albinism in some areas, there is still much to do in tackling the many forms of discrimination and stigma that people with albinism face. I feel very strongly that this kind of discrimination should be stamped out.
Albinism is still, as the United Nations says, profoundly misunderstood, socially and medically. And these problems exist in the UK and Republic of Ireland as much as elsewhere.
Albinism is a genetically inherited condition which is most noticeable because people with albinism have white – or very pale – hair due to the reduction of pigment in their hair, eyes and skin. It also means the person living with it suffers from partial to severe visual impairment and photophobia (a severe sensitivity to light). Nystagmus is a common factor among people with albinism, too.
People from all ethnic groups can be affected by albinism, and the Albinism Fellowship supports all of these groups with our services.
This year, the Albinism Fellowship has a message of support for our charity’s members throughout the British Isles and Ireland. We’re using the social media and communications channels of charities such as the Nystagmus Network who are involved in tackling site loss, and we are grateful for their support.
At the Albinism Fellowship, we would remind our members of the range of services we can offer to help, and would encourage people with albinism who are not part of the Fellowship to join up.
New for 2018 is our ‘Understanding Albinism’ brochure which is already proving a valuable source of information for people with albinism, parents, healthcare professionals, visual impairment professionals, school teachers and others.
This booklet is already being very well received. Existing members should already have received their copy by now. Any new members joining us will be posted a copy of Understanding Albinism as well as our members’ magazine, Albinism Life.
And there will be an invitation to take part in a range of useful and enjoyable events, including our regional gatherings and our national conference in 2019.
Members tell us that while our online resources are of great benefit, meeting other people with albinism and their families face-to-face at our events is often the most valuable resource.
We have a range of opportunities this summer for new and existing members to do just that, including the Thames Valley Get-Together in Taplow, Bucks – which will be held on 23 June, just days after International Albinism Awareness Day. We’d love to see you there.
Finally on this guest blog, a “shout out” to our fund-raisers who continue to do an immense amount to support our small charity, which is run entirely by volunteers. If you would like to get involved in fund-raising for the Albinism Fellowship – which helps us run essential events like the ones above – or sponsor us, please do get in touch.
Your support for the Albinism Fellowship is always very welcome, thank you so much.
Roselle Potts
Chair, the Albinism Fellowship
