Curing gyrate atrophy - on our way!
December 2022
Dear Friends and Supporters of Conquering Gyrate Atrophy,
I hope you and your families are staying safe and healthy. We have so much to tell you about our progress towards a cure for gyrate atrophy!
It’s hard to believe that Conquering Gyrate Atrophy is only 3 years old. When we started, we did not know of ANY ongoing research on gyrate atrophy. Our goal was simple: Find the best researchers in the world and support them to find a cure. We are thrilled to say that in this short time, we are on the way to a cure.
Here’s what we are currently supporting:
We continue to support Dr. Katherine Uyhazi, in Dr. Jean Bennett’s center, the Center for Advanced Retinal and Ocular Therapeutics (CAROT) at the University of Pennsylvania to support research towards developing gene therapy to slow and/or reverse the progression of gyrate atrophy. We’ve provided $200,000 in funding.
We awarded $50,000 for research towards gene therapy with liver cells to Wilmer Eye Institute, Johns Hopkins University, led by Dr. Jefferson Doyle.
We have joined with the Foundation Fighting Blindness and the FDA to support a natural history study of gyrate atrophy. In fact, their support depended on an organized and engaged patient community - all of us! This is led by Drs. David Valle and Mandeep Singh of Johns Hopkins School of Medicine. When looking for a cure for a slow-moving disease, the big question is how will we know if a treatment is working? In simple terms, this natural history study will determine what “success” means which is critical for future clinical trials of treatments. We provided a letter of support and committed $100,000.
What’s next? Support for stem cell research to regenerate retinal epithelial cells, support for metabolic treatments and so much more but only with your help to raise funds.
This is all because of you!
We’ve learned that being organized as a patient community is absolutely essential - many big funders will not support research without that. We’ve also learned that modest funding amounts can be the difference between working on a disease or not. Our support has allowed labs to begin work on gyrate atrophy.
Thank you for sharing your stories and for your financial contributions! We are working with some of the best researchers in the world and we can’t stop now.
We need your help in two ways
Share your story with us on our website. We recently updated our website (please check it out here) and can include many more patient stories. Send an email to info@gyrateatrophy.org.
Make a donation. Ask friends, family, business partners to make a donation. Ask your company about matching funds. The more funds we raise, the faster we find a cure.
We are just getting started and already so many people have helped us with every step. We are deeply grateful that you are on this journey with us.
Wishing each of you a wonderful holiday season and beginning to the new year!
Karabi and Malay Acharya | Founders, Conquering Gyrate Atrophy
