On Saturday, 15 October 2022, my friend Maria and I will attempt to cycle around the Isle of Wight - a ride of about 100 km (65 miles) and about 1700 metres of climbing. Maria is a seasoned cyclist and she's going to be fine. For me, this will be a long and hilly ride. A true challenge.

I'm riding to raise funds for the Syngap Research Fund UK (SRF UK). Why? Because they are funding research that could be life changing for my little daughter Gracie.

Gracie was born with a micro deletion in her DNA. She only has half as much Syngap protein in her brain. That protein is really critical to neurological development. So while Gracie does learn, it is very very slowly. At the age of 9, she is still non-verbal and struggling with basic self-care skills. Variants in Syngap1 are actually quite common but until 2009, was undetected. It is one of the most common genetic causes of intellectual disabilities in humans at 1-2%, similar to more known syndromes like Fragile X, Angelman and Rett.

And like these rare diseases, we are searching for a cure. What if through gene therapy we could give her brain additional syngap protein? Would it change her learning ability and outcomes?

Well, I'd like to find out. And two amazing people at the University of Edinburgh's Patrick Wilde Centre leading a team of people this year to see if new virus technology could help deliver additional syngap protein to the brain. This has worked for some other rare diseases.

SRF UK need to raise £100,000 to fund the study. Through some other events and thanks to one very kind angel donor, we have now raised £95,000 of that goal. Its the last £5k that we need. Can you help? Every £5 or £10 I can raise will help get us to the final goal. And maybe get Gracie to a cure.

Thank you for your support,

Julie

ps - You can follow my training and ride on IG @sensible_parent