I've raised £1000 to help families get together at annual conference whose children have a brain growth condition known as DYRK1A.

Organised by Sarah Stevenson
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Children and youth

Story

DYRK1A is a gene which is involved in brain growth. This rare syndrome has only been recognised in the last 9 years, and there are currently only 200 or so families across the world affected by it. Children with it typically have epilepsy, a small head, speech delay, short stature, autism, and cognitive impairment. My friend Janet Banks has a beautiful little boy who is affected by this condition. She is putting together a families meet up conference in London on 21st July, and amazingly has managed to get several families from Europe who are also affected, to attend, as well as 3 keynote genetics and therapists speakers. Together they will share their experiences of this rare condition, and the speakers will discuss the most up to date knowledge of this complex syndrome. We are hoping to raise this money to help fund the meet up conference costs. Thank you xx

About fundraiser

Sarah Stevenson
Organiser

Donation summary

Total
£310.00