
jess clatworthy
co-founder

My name is Jess and I'm blessed to be a Mum to three beautiful children: my daughter Daisy (9), Lolli, who sadly passed away just before she turned three, and Alfie (3). Both Lolli and Alfie inherited the rare genetic condition CRELD1, which we were unaware of until 2021.
​
I worked as a pediatric nurse for over 20 years but gave it up to care for Lolli and Alfie. Having spent the last few years caring for children with CRELD1, I'm all too aware of how cruel and relentless this condition can be.
CRELD1 affects every aspect of our daily lives. It's been a rollercoaster of good days and bad days. After trying so many different treatments for seizures, as well as many alternative therapies, we weren't seeing positive results. We felt that our only hope was to turn to science to see if we could uncover anything about this condition that would help Alfie and the other children suffering from it.
CRELD1 Warriors was born out of an extremely supportive and caring group of parents who want to help their children and each other. When we found a researcher in the UK, Dr. Felix Chan, who wanted to investigate CRELD1, we registered the charity in July 2024 to raise funds for his research project and continue the support our online community provides.
CRELD1 Warriors is a beacon of hope for our family. We hope that one day we will be able to give Alfie a life that is free from suffering and enable him to be the happy little boy he wants to be.