Curing gyrate atrophy!
December 2023
Dear Friends and Supporters of Conquering Gyrate Atrophy,
We hope that you and your families are finding moments of joy and connection as we approach the end of the year. We recently learned about the concept of “glimmers”. Glimmers are the opposite of triggers in that they spark joy and hope. We hope this note will feel like a glimmer to you. There is so much progress on the road to a cure for gyrate atrophy.
We’ve been waiting and waiting (and waiting…) to write this note with the hope that we could announce the launch of the first ever natural history study on gyrate atrophy. And finally, we can say…
The natural history study of gyrate atrophy (GYROS) is launched! The first patient has been recruited! Check it out here.
What will this study do? 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. Unfortunately we don’t yet have a flyer to share (it is still under review).
How can you participate? Please review the information about the study and note the participating centers. More centers will be added to the list. You can reach out to any of the ones that are recruiting. We will continue to share more information as we have it.
This would not have happened without your support! We joined with the Foundation Fighting Blindness and the FDA to support this study. Their support depended on an organized and engaged patient community - all of us!
We continue to support gene therapy for gyrate atrophy.
We continue to support the work of University of Pennsylvania and Johns Hopkins University who are working on gene therapy approaches for gyrate atrophy. The diagram below shows the main steps to developing gene therapy. You may have heard about the recent approval of gene therapy for sickle cell disease. Although this disease is very different from gyrate atrophy, ANY research on gene therapy approaches helps us and increases the speed of the work.
More researchers are interested in gyrate atrophy!
When we started 4 years ago, there were almost no active studies on gyrate atrophy. We continue to receive letters of interest from renowned researchers. For the first time, we have had to turn down requests for funding, due to a lack of funds.
The momentum is building as more and more progress is made. Now is the moment we need to raise funds. Please consider making a donation to support finding a cure. No amount is too small - or too big! 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. Please email us with any questions at info@gyrateatrophy.org.
We are deeply grateful that you are on this journey with us. Wishing you a holiday season full of glimmers and Happy New Year!
Karabi and Malay Acharya | Founders, Conquering Gyrate Atrophy