This year we discovered that our beautiful boy had an ultra rare neurodevelopmental genetic condition, so for me raising funds for jeans for genes day is personal. His condition is the main driving force behind his epilepsy and ADHD, causing frequent and difficult to control seizures and a medication load that means he lives his day on a neuro-chemical rollercoaster. He is a bubbly, fun and creative kid with a kind heart. He loves others and desperately wants to be friends with everyone, but the freedom of his childhood is often impacted by managing his condition ( it's hard to just go with the flow when you need 7 doses of meds a day- 210 doses/month). My hope is that by supporting this cause we can be a part of pushing forward the science behind emerging gene therapies. Antisense Oligonucleotide (ASO) therapies, something that the jeans for genes day community supports, holds promise for disorders such as my sons and every contribution big or small helps.

So, this August, I’m taking on the Ks for Kids challenge - walking or running to raise funds for Children’s Medical Research Institute, supporting scientists who are working today to find cures for tomorrow.

Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.

Every step I take is for my boy and all children living with a genetic condition. Your donation will help me go the distance and fund vital research!