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Profile

Dylan Ward

Walk for NF2

Total raised so far £0.00

Target £0.00

Total plus Gift Aid: £0.00

Raised offline: £0.00

My story

[p]My name is Dylan Ward, aged 13 years. [/p][p]I am doing my Bronze Duke of Edinburgh Award and I am volunteering with NF2 BioSolutions UK raising awareness and funds to advance gene therapy and immunotherapy for a treatment to NF2.[/p][p]I will be doing 100 laps around the block where i live. Each lap approx. half a mile, in total I will be walking 50 miles for NF2. It will be cold but hopefully no snow.[/p][p](NF2) is a rare genetic disorder that affects approximately 1/35,000 individuals globally, it results in the growth of multiple tumours throughout the central (brain & spine) and peripheral nervous systems. As the tumours grow, they cause permanent and life changing damage. There is no cure.[/p][p]My brother, Oscar aged 9 has NF2. My mum has got it too and he inherited it from her. Oscar has 3 brain tumours (2 Vestibular schwannomas and 1 meningioma) and 4 spine tumours and must be monitored closely in case they grow. As the tumours grow they will do more damage. Already he has a spine tumour that is causing mobility problems and damaging the nerves in his leg which means he has foot drop and is developing a club foot. He will need surgery in a few years, but the damage has already been done, they cant remove the spine tumour though as its too risky.[/p][p]Our hope is for a cure with gene therapy that is why I am supporting NF2 BioSolutions UK, so Oscar can live the life hes meant to and he can play football with me and all his mates. Oscar has a low level hearing loss too, I don’t want him to become deaf though cos we enjoy playing together and listening to music together, but we wont be able to do that if he’s deaf and that’s scary and sad.[/p][p]Not many people have heard of NF2 either, so I want to raise awareness then maybe more doctors can help us get a cure.[/p][p]I want to help Oscar and all the other children in the world affected by NF2 so they can grow up with better lives, but without the money for gene therapy research then it wont happen.[/p][p]So I decided that I could make a difference by volunteering for the charity and raising some money while raising awareness. [/p][p]Please support me all you can.[/p]
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Event

Personal Challenge Date

30 Jan 2021

Supporters

Jan 19, 2021

Anonymous

£10.00

Jan 17, 2021

Sue and Philip

Another missed haircut so I am donating the money to you . Philip and I will keep you company on a couple of laps . We know you can do it . Sue and Philip

£40.00 plus £10.00 Gift Aid

Jan 17, 2021

Janet

Well done Dylan I am a friend of Phil and Sue

£30.00

Jan 16, 2021

Cathy

Keep the faith Dylan. You can do it.

£50.00 plus £12.50 Gift Aid

Jan 12, 2021

Callum and Barbara

Good luck Dylan, from Barbara, Callum, Michael & Thomas

£15.00 plus £3.75 Gift Aid

Jan 4, 2021

Chris hudson

Well done Dylan for wanting to do something special to help others

£50.00 plus £12.50 Gift Aid

Jan 4, 2021

Matt

£20.00 plus £5.00 Gift Aid

Jan 3, 2021

Anonymous

£30.00

Jan 3, 2021

Chrissie Twigg-Stewart

Well done Dylan. Great cause xx

Jan 3, 2021

Clare

Because you are delayed now, a little bit more for the pot x

£10.00 plus £2.50 Gift Aid