Fragile X Syndrome

Hi,

My name is James Woodward, many of you already know, I have a little boy age 5 with a genetic condition called Fragile x.

Jude was diagnosed with Fragile x at the age of 18 months old.

Myself and my friend Chris Butterworth are running the York Marathon on the 19th October 2025 to raise money for a charity that holds a special place in our hearts. The Fragile X Society.

The Fragile x Society have supported myself and my wife as well as Jude through the last 3 years since Jude’s diagnosis.

What are we trying to raise the funds for?

One exciting area is the ongoing development of gene therapies aimed at addressing the underlying cause of Fragile X the silencing of the FMR1 gene. Researchers are exploring ways to "reactivate" this gene so that it can produce the vital FMRP protein, which is typically absent or reduced in individuals with the full mutation. This could potentially lead to therapies that go beyond managing symptoms and actually target the root cause of the condition.

Recent advances in CRISPR gene-editing technology and RNA therapies have shown promise in laboratory settings. While these treatments are still in early stages, they represent a hopeful future and are part of a growing global effort to develop more effective, long-term interventions for Fragile X Syndrome.

Gene Therapy for Fragile X would be a life changing treatment not only for our little boy Jude but for many other families out there living with this challenging condition.

Any donations big or small would be massively appreciated.

Thank you for taking the time to read our story and donating.

James, Sheridan & Jude x