PIGA-CDG is a devastating, rare genetic disorder. It causes intractable (drug resistant) seizures, global developmental delays, severe muscle tone disorders, persistent respiratory illnesses, and so much more. Many children born with PIGA-CDG don’t make it past 2 or 3 years old. That was true of our son Emmett, who passed away in 2020 just before his 4th birthday.
From the time we received his diagnosis, we’ve been working to find a treatment for PIGA-CDG. And even though he’s passed, we’re continuing our efforts in the hopes of helping other children and families who have or will receive this diagnosis. We’ve assembled a truly wonderful team of researchers who are committed to working with our Community to find a cure for PIGA-CDG. We believe this will also open up opportunities for other CDG gene therapies, particularly those in the same GPI-anchor pathway.
Our mission with this fundraising campaign is to raise enough money for the next phase of gene therapy research – it’s taken over $100k to get us this far; we NEED your help to get to the next step and advance this potential cure.
CDG CARE is a registered 501(c)3 organization. All donations are tax-deductible and will be dedicated to fund this PIGA-CDG research initiative.
We invite you to become a part of our story, and the story of families around the world.
For information about PIGA-CDG and our research, please visit:
Due to individual and weekly donation limits set by our Give Lively platform, we encourage our donors who wish to donate greater than $5,000 to review additional ways to give on our website at https://piga-cdg.org/donate/