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Wolfram Syndrome UK Support Group - Winter 2015 Newsletter
Click here to read the latest Wolfram Syndrome UK Support Group newsletter.
If you missed the Autumn edition you can catch up by clicking here.

Wellchild Wolfram Syndrome Support - e-newsletter - Spring 2015
Click here to read the latest edition of the Wellchild/Wolfram Syndrome Support Network newsletter.

If you require a Braille or large print version of the WWSS newsletter,
please contact Rachel Bates on 01242 548762


Extensive video coverage of the conference
is now available on our You
Tube channel.

Please Click Here

Naomi Bennet speaking at the Takeda Conference.
Click below for pictures and her article about the experience.
Naomi's Article
(PDF Format)

Tracy Lynch - CEO of WSUK speaking to Jeni Barnett about Wolfram Syndrome, live on BBC Sussex on the 2nd September. Daughter Jennifer went in at the end for her picture to be taken with them as well.

or listen via the BBC iPlayer HERE (Interview starts at approx 2hrs 39mins)

We have been awarded funding from the Big Lottery Fund. Here is our official entry:

This is a project by a registered charity in Worthing serving beneficiaries UK wide. The organisation will use the funding to produce a range of resources for people with Wolfram Syndrome, a rare genetic condition consisting of diabetes mellitus, diabetes insipidus, deafness and optic atrophy.

This will enable medical professionals to increase knowledge, and sufferers and their families to be better informed to access therapy and support.

New Press Articles

Birmingham Brothers Could Go Blind Due To A Rare Genetic Condition
Roadtrippers Tackle Endurance Challenge - CLICK HERE
Charity In Health Alert - CLICK HERE
Spreading The Word On Wolfram - CLICK HERE
ITV's Text Santa is a marathon programme, with big celebrity names - raising millions of pounds for great causes.
Thanks to your donations and fund-raising efforts, over £5 million was raised last year.

Tom Savvides meets Jennifer, a brave
13-year-old, from Worthing, in Sussex, -
supported by nurses from the Wellchild charity.

Jennifer Video


On Saturday 3rd May as part of the Brighton Fringe festival, Brighton GMC put on a concert called Nautical but Nice at St George's Church, Kemptown, Brighton supporting WSUK. At the end of the concert Tracy Lynch, CEO of WSUK, got up and gave a brief talk about Wolfram Syndrome and the charity and how she is linked with it. After the encore there were shakers and buckets on the door taking collections from the audience, some people putting £10 notes in and commenting on the talk about how informative it was and asking more about the condition. The total raised was a magnificent £361.57.

Tracy found out a couple of days later when she visited the chorus to thank them again that she had spoken to an audience of about 350 people including the choir, the most she had addressed previously being about 80, she doesn't count radio interviews as she says you can't see the people listening so it isn't quite so nerve wracking. The team of fundraisers there that night thought it was only about 200, which Tracy had already been nervous about. WSUK hope to join them at another of their events in the future. It was a fabulous night of singing and humour enjoyed by everyone there.

The members of the BGMC all said that the talk given was the best they had ever had given, it was informative but succinct, with no rambling on as some others had done. We have also been told that this was the most raised in a night for one of their smaller concerts! Click Here to find out more about BGMC.

Two new articles in the Worthing Herald !

Charity set up to aid daughter's condition - CLICK HERE
Students help raise awareness of rare disease - CLICK HERE

Wolfram Syndrome UK Support & Information Day - Report - November 2013

Our second
support and information day proved to be a great success, with many informative speakers. Please click here for a full report of the event. (PDF Format)

Spirit FM - Local Hero Awards

On Friday 4th October 2013, 11 year old Jennifer Lynch picked up a well deserved Bravery Award from the Spirit Fm Local Hero Awards night.
Nominated for everything that she has had to deal with over the last few years with all the tests & then last year with all the time spent in PICU & hospital, having a tracheostomy & getting back to school full time. The judges felt that she most deserved the award this year for showing such fortitude in coping with all the day to day challenges she has to overcome. Not only was she presented with a trophy from William Frost, owner of Frost Cars Sussex, but she also accepted a £200 cheque for our charity Wolfram Syndrome UK.

Click here to watch a short YouTube video of highlights from the night showing not just Jennifer but all the other deserving winners as well.

Gavin's Story...

Gavin, from County Offaly, has been diagnosed with Wolfram Syndrome for 8 years. He is registered blind with some hearing loss. Gavin had diabetes mellitus aged 2 and a half years, and began developing Optic Atrophy in his teenage years. It wasn't until he was 25 that a Consultant took him to one side and suggested that his symptoms could be due to a genetic condition: "When the Genetic specialist told me I had Wolfram Syndrome it didn't sink in, it went straight over my head. I found it hard to accept. I was annoyed that is was purely by chance that it was diagnosed".

After leaving college with a Level 6 qualification in Accountancy, Gavin began a course in Work Skills with the National Council for the Blind. It was while he was doing this course that Gavin decided to make some changes: "I was doing the course in work skills when I realised I was not doing much else – I was socialising with friends at the weekend, but I felt there had to be more to life".

He had a chance meeting with a fundraiser for the National Council for the Blind, who suggested he try tandem cycling as a way of getting out and meeting new people.

Gavin says his first time on a tandem bike "felt brilliant, I hadn't cycled a bike in years and I enjoyed being out in the fresh air, on a sunny afternoon".

His cycling went from strength to strength and he competed for Ireland at the Paralympic World Championships in 2007, as well as completing the Wicklow 200, Ireland's Premier Cycling Challenge, in 2010.

But the achievement Gavin is most proud of is taking part in a fundraising event for the National Council for the Blind in 2006. The event was held in Southern Spain, and involved cycling 700 km over 10 days. He says it was "brilliant, one of the best things I've ever done. There were 70 odd people, mainly solo cyclists with 6 or 7 tandems. We did some sight-seeing in between riding and I met some great people, who are still good friends".

When asked why he enjoys cycling so much, Gavin replied: "I like pushing myself and I like to feel fit. It gives me more energy".

Gavin is a massive inspiration and proves that with determination and sheer grit you can achieve your dreams.

Gavin was interviewed by Rachel.

DfE Transition Project

Are you aged 16 to 25 with a multi sensory impairment?
Would you like to help inform the government how they can better support young people with the transition to adulthood?
SENSE and the Department for Education are putting together forums where young people with MI can talk about the support needed when they moving from school to adult life.

The forums will be based in Birmingham in early November, and there is funding available to help with travel expenses for young people coming from further afield. There will also be the opportunity to get involved in other ways, via telephone or email.

To find out how to get involved, please contact Rachel Bates on 01242 548762 or by email.

Wolfram Syndrome UK - A registered charity

On 17th June 2013 Wolfram Syndrome UK became a registered charity in England & Wales. This means we can now move forward with fundraising in our own right & try to raise awareness of the Charity & the condition.

We also have a direct telephone number (see the 'contact us' page) to the WSUK office for any queries/questions that you might want to ask in person rather than by email.

Ever thought about....Organ donation?

Organ donation is always in the news & ITV ran an awareness campaign earlier this year about it trying to encourage everyone to carry a donor card.

Are you aware that even people affected by Wolfram Syndrome are able to register as donors? This was mentioned by the sister of a 50 year old sufferer:

"Wolfram patients can become organ donors. I thought it wasn't possible but on the day my brother Paul was due to have his breathing tube taken out we enquired about it. When the organ donation team came and looked at all the facts of the illness they discovered that the kidneys and possibly the liver could be used. This is because only the nerves are affected not the organs. It gave my father and I a lot of comfort after Paul's death knowing that two people were living better lives because of him. The transplant team were fantastic and the follow up treatment we received from them was so thoughtful and caring. We have had contact from both of my brother’s recipients in the months following which was amazing and I have no regrets about the decision we took. I know Paul would have wanted it as he always carried the card when he was younger and more able."

Click here to find out more

Our Charity Twenty-20 Cricket Match - June 2013

On Friday 21st June Steyning Rebels v Steyning held their 2nd Charity Twenty 20 cricket match under a glorious mid summer sky. There was a BBQ, children's activities, raffle & auction all taking place during & after the match.

Some fabulous raffle prizes and auction lots were donated including a commemorative Brighton & Hove Albion football shirt, signed by all the players with tickets & lunch to a match next season, entry for two to Brighton racecourse with grandstand and paddock passes and signed albums. The event was very well attended with all proceeds going to Wolfram Syndrome UK.

The evening raised just under £1500 & was enjoyed by everyone there.
Click here to see more photographs from the match!

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