Update March 2021
March 2021
Dear Friends and Supporters of Conquering Gyrate Atrophy,
I hope you and your families are staying safe (and sane!) in these challenging times. We are excited to share some big news with you! Really big news!
When we set up this organization just over a year ago, we thought about which researchers we would love to have focus on gyrate atrophy - who was doing the most cutting edge research on retinal diseases. What is our dream list? The top of the list was Jean Bennett at the University of Pennsylvania because she developed the first FDA approved gene therapy treatment for an inherited retinal disease - Luxterna.
And guess what?!
In the fall of 2020, we awarded $100,000 to 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.
But wait, that’s not all…
We have a growing list of our “dream team” of researchers. And many researchers are reaching out to us from around the world and we want to support as many lines of research as possible. So we are launching our first official Conquering Gyrate Atrophy fundraiser!
We are excited to partner with Beyond Our Sight to bring an immersive experience where participants can experience blindness for a brief time and perform some simple exercises. Here’s a video to give you a sense of the experience. This is entirely virtual. We will need your help to spread the word and encourage people to sign up. Many more details to come but in the meantime…
Save the date! May 22, 2021; 6pm Eastern Time (US)
Think about 10 people you could invite to participate in Beyond Our Sight
Think about business sponsors you might be able to enlist
We will host a zoom meeting to discuss this fundraiser and how you can help so look for that email soon. We are preparing marketing materials that you’ll be able to use to gather support.
Please reach out to us with any questions or ideas you may have. 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.
Karabi and Malay Acharya
Founders, Conquering Gyrate Atrophy