Story
Thank you for visiting my page. This charity is very close to my heart because my son Oliver has DYRK1A Syndrome, and this community has been such a support to us. This summer we attended the conference and it was such a valuable experience that I really wanted to help raise money so that this can happen again in 2023. This syndrome is extremely rare (only hundreds of known cases across the whole planet) so any opportunity to meet other individuals who also have this syndrome, and spend time with them and their families, is invaluable. The charity is looking to raise £4000 in total to support this event. This enables us to hold the conference in a suitable venue, fully kitted out to support additional needs, and it will give us time to both listen to some amazing speakers and to spend time socialising and making connections with other families. The conference itself helps us to hear directly from scientists working on this condition, how fascinating (and empowering) to know that there is a growing awareness of this syndrome in the scientific community around the world. Before Oliver's diagnosis I felt very isolated; I am so grateful for this community.
Times are tight; I understand that there isn't much spare money around right now. I picked this challenge partly because I'd like to get fitter, and I'm spreading the word about it so that I have a real incentive to keep swimming. I'm really nervous about it - this is at least double or realistically triple the amount I usually swim per month! I will be so massively grateful for any moral support and cheerleading you can mange with or without a financial donation. Plus, if you’ve read this far then I’ve already succeeded in helping to raise awareness about support for rare genetic syndromes. Thank you!
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.