social fundraiser clinic
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Various Dates - Over The Wall Childrens Camps
Therapeutic recreation camps to help children with a life-limiting illness and their families.
These are held throughout the year for children, their siblings and families at various locations throughout the UK.
Click here for all the dates and details.

To apply for a place please click here for details of the application process and form.

2nd April to 7th April - YOUNG & ACTIVE - Bradbury Hotel, West Sussex
Organised by the Royal Blind Society - please Click Here to download the programme of events (PDF Format).

7th & 8th April - Children's Wolfram Syndrome Clinic
Please see our Clinics Page for further details

28th April - Rare Disease Awareness Day, Dunstable
Join Alstrom Syndrome UK, the WellChild Wolfram Syndrome Family Coordinator and RP Fighting Blindness for a FREE open day for advice and information about these rare diseases, which all lead to vision loss.
For more information, click here to download the flyer (PDF Format).

2nd May 2014 - Adult NHS Wolfram Syndrome Clinic
Please see our Clinics Page for further details (Date may be Subject to Change)
2nd & 3rd May 2014 - Brighton Fringe - Gay Men's Chorus
The award winning Brighton Gay Men’s Chorus are raising funds for:
Wolfram Syndrome UK Support Group, a registered charity no. 1152445
RNLI Brighton Lifeboat Station, a registered charity no. 209603
Click here for further details and to purchase your tickets.

17th May – Clinical research Facility - Birmingham Children's Hospital 10:00 – 13:00
Blood samples being taken from children affected by WS and their parents for testing candidate drugs. Lunch and refreshments provided.

If you can attend please contact Caitlin Richens – 0121 333 8813 or via email, or Tim Barrett via email. If you are unable to attend but are interested then please contact them as there will be further chances. Adult samples are hoping to be collected at conference in November.

28th May – Family Guide Dog Experience Day - Atherton Guide Dog Training School, Greater Manchester
Organised by NCBS, the day includes introductions from NBCS and Guide Dogs, a tour of the training centre, a practical hands on guide dog experience for all the family, a question and answer session, and time to chat over a picnic lunch.

Only ten families can be taken to ensure everyone gets the most out of the day. Contact Sally Freeman on 01278 764775, mobile 07854 331979 or email

16th -– 21st June - South Downs Way Challenge - Winchester to Eastbourne - UPDATE
Twin brothers will be taking on this challenge to celebrate their 50th birthdays. One of them, Jonathan, who is part of the cricket team captained by our Head of Fundraising, Paul Lynch, decided that they would like to do this challenge and raise the money for WSUK as well as hoping to raise awareness.

David & Jonathan Vinen completed their 100 mile walk in glorious sunshine in Eastbourne about 3.30 pm on Saturday 21st June. They had friends and family join them along the way from day 2 onwards. WSUK’s Paul Lynch joined them on Tuesday (day 2) from East Meon to Cocking, walking 19.5 miles but says it felt like more! They were very lucky with the weather with only about half an hour of rain on one day in total.

Everyone that took part just kept commenting on the views of the wonderful Hampshire and Sussex countryside and coastline. Day 4 saw them celebrate their 50th birthdays and they have very kindly donated all their birthday money gifts to the charity.
The total raised so far, including Gift Aid, is £3237 but more money is still coming in with their fundraising page open until September. Jennifer and Tracy Lynch attended a celebration tea and presented each of them with a trophy as a memento of their achievements.

2nd July - Charity Jump
Chris Toouli who is affected by WS will be jumping out of a light aircraft at 12,000 ft. He feels that the time is now right for him to do something like this. Click here for his fundraising page.

Friday 11th– July - Charity Golf Day - Hassocks Golf Club
We had over 40 golfers at last year's event, although some of the golf was a little iffy and some of the handicaps were dubious!
The day itself was memorable as an extremely fun day with great company and an overwhelming success financially for the charity. The day will be sponsored by Penfold Verrall and food will be served at both ends of the day.

We will have the usual team competition plus other prizes and forfeits and ask that each team donates a sum to the charity. There will be an auction/raffle at the end. We realise many of you cannot commit so far in advance, but I would appreciate a show of intent so that I can book appropriate numbers with the club.

Please contact either of the organisers, Paul or Darren, ASAP please for more information or to book your place(s)

14th & 15th July - Children's Wolfram Syndrome Clinic
Please see our Clinics Page for further details

6th August - Sponsored Sky Dive
Shane Roberts, who is affected by WS, is undertaking a sponsored tandem skydive at Langar Airfield, Nottinghamshire at 10.00 am. Please go along to support him if you are able to or you can donate by clicking HERE - Thank you!

13th August - Family Guide Dog Expeience Day - Woodford Green, London
18th August - Family Guide Dog Expeience Day - Leamington Spa
Please see the event entry above (28th May) for full details of these events.
There will also be an event held in Scotland - the date has yet to be confirmed - please check back regularly!

20th August - NCBS Summer Party Fun Day - Thames Valley Adventure Playground, Maidenhead
The Thames Valley Adventure Playground is a fantastic place for children with disabilities and their families. It has a massive indoor play area, a fully equipped arts and crafts room, multi-sensory white room, dressing up room and a computer room. Outside there are swings with bucket seats and harnesses, bikes, go-carts, castle play area, music structure, play area, toddlers area, aerial runway with bucket seat and full harness, to name a few!

Children with a vision impairment plus one parent/guardian are free, immediate family members £2 per person. Bring your own picnic lunch and they’ll provide the drinks. For more information contact Sally Freeman on 01278 764775, mobile 07854 331979 or email

27th August– - Audio Described Performance of Wicked, Birmingham Hippodrome
NCBS have 40 seats for 20 children with a VI, accompanied by a parent/guardian. They would like to encourage children who have an interest in the theatre and priority will be given to children who did not attend The Lion King last year.

Children with a vision impairment are free and they are asking for a £10 donation for each parent/guardian. Please contact Sally Freeman on 01278 764775, mobile 07854 331979 or email for more details.

12th September 2014 - Adult NHS Wolfram Syndrome Clinic
Please see our Clinics Page for further details (Date may be Subject to Change)

Friday 19th– Monday 22nd September - The 2014 Charity Roadtrip
At least 6 teams will be travelling the length and breadth of the UK delivering information packs, and raising awareness at the same time, to the 23 main Children’s Hospital in the UK. The teams have been challenged to complete the task in under 60 hours!!. For more information please go to the Charity Roadtrip Website or to the fundraising page.

6th & 7th October - Children's Wolfram Syndrome Clinic
Please see our Clinics Page for further details

1st November 2014 - 80's Night
At St Paul’s Church, Worthing - an 80’s night is being held with 2 local bands entertaining everyone. Click here for all the details and to buy tickets!

14th November 2014 - Adult NHS Wolfram Syndrome Clinic
Please see our Clinics Page for further details (Date may be Subject to Change)

29th November 2014 - Wolfram Syndrome Support & Information Day
The 3rd Annual WS Support & Information Day will be held at the Hilton Hotel, Northampton.
Full details of event timing, speakers and a booking form will be published shortly.
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