News and Events
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 firstname.lastname@example.org
Wolfram Syndrome Support and Information Day November 2013
A date has been set for the next Wolfram Syndrome Support and Information Day. It will be held on Saturday 23rd November 2013 at the Hilton Hotel, Northampton, the same venue as last year.
The format of the day is currently being finalised but the day will run similar to last year; with presentations in the morning and Question and Answer sessions with the experts after lunch. Confirmed speakers so far include:
Professor Tim Barratt (Children’s WS Clinics)
Professor Karen Morrison (Adult WS Clinics)
Raj Gupta (Neurology)
Liam McCarney (Urology)
Faiza Sasir (Psychology) and
Marie McGee (Transitions Coordinator)
Acting upon the feedback from last year,the format will be slightly different this year. A designated separate “Chill Out” room will be available for young adults, where they can relax and take time out from what can be an intense day! The charity Action for Blind People have kindly offered to attend the day in order to spend some time with the young adults, providing training on using iPads and access to other technology. A longer lunch break than last year is also planned in order to give families a chance to get to know each other.
Keep your eye on this page for further developments or contact Rachel on email@example.com to book your place.
Your Lives: Inspiring Young People
Keri Chambers, 26, from Ilkeston in Derbyshire, was diagnosed with Wolfram Syndrome at 5 years old. Her brother, who is 2 years older than her, was also diagnosed with Wolfram Syndrome around the same time. Keri says it was hard for her family;
“It was very hard work for Mum and Dad, knowing that Alex and I would lose our sight and hearing. “
It was also a difficult time for Keri, who felt she was missing out: “Not being able to play in the street with the other kids was hard, especially since they weren’t at the same school as me”.
Keri, who is totally blind and severely deaf, attended a mainstream school with a visual impaired unit some miles from home. Despite these difficulties, after finishing school Keri went on to study Maths at Sheffield Hallam University – and with the support of the Head of Maths achieved a First Degree in Mathematics. Keri says she was “really pleased, I was aiming for the best I could do. My parents always said as long as you do your best, that’s all anyone can ask. They didn’t pressure me but just supported me”.
After gaining her degree in Mathematics, Keri took a course in teaching, and now teaches Braille three times a week and really enjoys it.
In her spare time she reads a lot; “I’m a real book worm” she adds , and she enjoys cross words and word puzzles, goes fishing and goes to the gym once a week with a carer. She also loves scrabble and plays this and other board games with her brother Alex.
Keri is a massive inspiration and proof that having Wolfram Syndrome is not a barrier to a happy and fulfilling life.
This event is kindly being supported by Genetic Disorders UK and Jeans for Genes
Worthing High School holds Purple Sponsored Day
Worthing High School held their second purple themed non uniform day last month in aid of WellChild, who are helping to fund research into a rare progressive condition called Wolfram Syndrome, a condition suffered by the younger sister of one of their year 10 students and to raise awareness of Rare Disease Day.
WHS students Marcus Lynch, Charlotte Nye, Chloe & Charlie Maclaran are the organisers of the Junior Charity Roadtrip, a part of the Charity Roadtrip fundraising group formed by their parents supporting WellChild. Aproached by Steve Jeffery, the teacher in charge of Community Charities within the school, they discussed holding this day again after the huge success of last years, which raised over £880. Mr. Jeffery said,
“We are REALLY happy to help. It is our pleasure and makes charity work so much more meaningful and poignant when we are potentially supporting family members of our school children through the focus. This year we are pleased to have raised so far £557.88”.
...As do the English Martyrs Primary School
English Martyrs Catholic Primary School, Worthing held a purple themed non uniform day on 1st March in aid of WellChild, Wolfram Syndrome research & to raise awareness of Rare Disease Day which is the last day of February every year. Tracy, mum of Jennifer who has Wolfram Syndrome, is a staff member at the school and asked them to help. So far, we are pleased to report that the schools fantastic efforts have raised just over £170.00.
...and Thomas A Beckett Middle School
Year 6 at Thomas A Becket Middle School held a purple themed non uniform day on 28th February in aid of WellChild, to raise awareness of Rare Disease Day which is the last day of February every year.
TAB pupil Jennifer Lynch, who has Wolfram Syndrome asked her school to support her fundraising for the condition & hopes that it may become a regular fundraising event. So far they have raised almost £170 and hope to increase that with other events throughout the rest of the year.
Our thanks goes out to you all!