Email Archive
Below you’ll find our past email newsletters. If you’d like to be included in future messages, please sign up here.
We Need Your Help Now!
June 2025
Dear Friends of Conquering Gyrate Atrophy,
Gene therapy and editing approaches are growing exponentially. We need to ensure these approaches are applied to gyrate atrophy and we need your help to raise $100,000 by the end of the year.
To date, Conquering Gyrate Atrophy has provided over half a million dollars to the top researchers in the world. A recent article in the Johns Hopkins magazine emphasized the importance of our patient advocacy.
We need to work faster because the vision of our loved ones continues to deteriorate every day.
What has happened with that half million dollars?
A lot.
Proof that gene therapy for gyrate atrophy works in human cell lines, see here.
Gene therapy with liver cells that fully corrects the key biochemical defects in gyrate atrophy mice, see here.
Better understanding of how gyrate atrophy is expressed in mice retina which helps us assess whether a treatment works. See the paper here.
Completed enrollment for the 1st natural history study for gyrate atrophy (GYROS) without which we can’t do clinical trials.
This work is at risk due to federal funding cuts for scientific research. We need to raise $100,000 by the end of the year in order to continue this research.
That’s a big number but we have done it before as a community and we can do it again.
How can you help?
Please donate generously - no amount is too small (or too big!)
Ask friends and family to donate by sharing your story and connection to gyrate atrophy.
If you have business connections, ask businesses to make a contribution to preventing blindness.
Contact us for other ways to help.
Thank you all for your continued support. To learn more visit us at https://www.gyrateatrophy.org/ or send an email to Info@GyrateAtrophy.org.
With hope and gratitude,
Karabi and Malay Acharya
Half a million dollars!
July 2024
Dear Friends and Supporters of Conquering Gyrate Atrophy,
I hope you and your families are staying cool during this hot summer. We are excited to share some updates on the research we’ve supported. But first… please enroll in the GYROS study.
If you or a loved one has gyrate atrophy, please enroll in GYROS, the natural history study on GA. We need as many patients as possible to participate in this study that will lay the foundation for future clinical trials on GA. There are centers around the world and some travel funds are available. See here for more details and the list of centers currently certified. There are 5 more centers in process. If you have any trouble, please let us know. We are happy to connect you with the organizers to find a way for you to participate.
And now for the research. To date, we have committed over $500,000 towards GA research!
#1:
Dr. Katherine Uyhazi and colleagues from University of Pennsylvania recently shared some results at the 2024 ARVO conference. Using cells from people with GA, they found that the cells recovered when treated with gene therapy. This is BIG news. This is the first indication that gene therapy will work on GA! Without this, we could not move ahead. See here for the full abstract.
#2:
Drs. Jefferson Doyle, David Valle and Mandeep Singh are working to test gene therapy for GA targeting the liver. Since GA is a metabolic disease, there’s reason to think this may be an effective approach. A recent update from them shared very positive results. (Can’t share the details just yet)
#3:
We have recently awarded a grant to Dr. Nicola Brunetti-Pierri and colleagues at Telethon Institute of Genetics and Medicine in Italy (our first international award!) to study some safety issues with liver-directed gene therapy. For more details, see here.
#4:
GYROS, the natural history study is well underway with 11 participants already enrolled. The goal is to have 45 participants. Please help us spread the word!
And most importantly…
We began this work with a scientific symposium hosted by Johns Hopkins where a group of preeminent researchers came to discuss gyrate atrophy for the first time. Now we have researchers around the world working on gyrate atrophy and all of these researchers are communicating and collaborating with each other.
This is a direct result of patient advocates who are pushing researchers to talk to each other and with patients. We must shout out a special thanks to Patrick Schultink in the Netherlands and Graciela Chairez in Mexico who have both organized meetings with researchers on GA. It takes all of us to build momentum!
Of course, none of this would be possible without you. Each of you has helped to build awareness about this disease and support finding a cure. If we can get to a half million dollars in under 5 years, let’s get to a million in half that time. Please donate to continue this research.
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
Gyrate Atrophy Natural History Study
Dear Friends and Supporters of Conquering Gyrate Atrophy,
As we mentioned in the last note, we are so excited to finally say that the GYROS study is officially launched! “GYROS results will help researchers design clinical trials for an emerging gyrate atrophy gene therapy.”
You can see the offical press release here. And below is a flyer with some of the key information.
Please participate in this trial! With so few GA patients around the world, we need everyone to join.
Go to ClinicalTrials.gov to see the participating centers. Note that not all centers are listed yet.
Conuering Gyrate Atrophy is so proud to be a part of this study. We could not do it without your support. Please consider making a donation to support GYROS and gene therapy studies for gyrate atrophy.
with hope,
Karabi and Malay Acharya
Founders
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
You're invited to a Gyrate Atrophy Symposium!
March 2023
Dear Friends and Supporters of Conquering Gyrate Atrophy,
Just a quick note…
On March 29, there will be a scientific symposium focused on gyrate atrophy hosted by the Emma Center for Personalized Medicine, Amsterdam UMC. This is only the second meeting EVER focused only on gyrate atrophy. (The first was in February 2020).
You are invited to join and bring your questions.
The meeting will be held March 29, 9:30-17:00 CET (5 hours ahead of US eastern time). This will be a hybrid meeting and you are invited to join online. The meeting is free but you must register by sending an email to garesearch@amsterdamumc.nl.
Karabi Acharya and Patrick Schultink will speak…
Patrick Schultink and Karabi Acharya will be speaking about the patient journey and putting a human face on the disease. Patrick has been instrumental not only in advocating for this meeting but also for the research they are doing on gyrate atrophy. There will be a question and answer session where patients and families can ask questions to the global experts on gyrate atrophy. See below for more details.
We hope to see many of you online at the meeting.
Karabi and Malay Acharya
Founders, Conquering Gyrate Atrophy
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
Recording of the Research Update on Gyrate Atrophy
Thanks to those who joined us on December 8 for the research update with Drs. Jean Bennett and Katherine Uyhazi from University of Pennsylvania. We had great participation and a good conversation.
You can watch the recording here.
With your generous support and donations, we have been able to support research on gene therapy for gyrate atrophy.
Please consider making an end-of-year gift to support this research and that of other researchers on gyrate atrophy. Any amount is deeply appreciated and 100% goes directly to support research efforts. You can donate here.
With all the best for the holidays and looking forward to a better 2021!
Karabi and Malay Acharya
You're Invited to a Research Update on Gyrate Atrophy!
Greetings to the gyrate atrophy community around the world!
When we heard about the development of Luxturna, the first approved gene therapy for a retinal disease, we asked what disease would be next? That question led us to start Conquering Gyrate Atrophy with the hope of raising funds to support research on GA. With almost no current research activity, we wanted to spark interest in the leading researchers to put their attention to GA. We were especially interested in the person behind the development of Luxturna - Dr. Jean Bennett.
And guess what?! Sometimes when you have a vision, it comes to be. Thanks to your generous support and donations, we have been able to support Drs. Jean Bennett and Katherine Uyhazi to conduct research on gyrate atrophy.
Although the research is still in the early stages, we wanted you to have a chance to hear from them directly and to ask questions. So please join us for a research update with Dr. Jean Bennett, Professor of Ophthalmology, University of Pennsylvania and Dr. Katherine Uyhazi, Assistant Professor of Ophthalmology, University of Pennsylvania.
Wednesday, December 8, 2021
Time: 3:30 to 4:30 PM (US ET time zone)
Registration is free but required. For more information and to register, click the Register Here button below.
Bring your questions!
Karabi and Malay Acharya
Last Chance! Join Beyond Our Sight for Gyrate Atrophy!
Can you help us get to 100k?
We started with a goal to raise $10,000. You pushed us to dream bigger. And you have helped us raise $63,000 for gyrate atrophy research!
Wow!
We are 1 week away from the Beyond Our Sight event. This will be an amazing opportunity to understand navigating the world as a blind person.
I think we can get to $100,000! That could support a research fellow to dedicate their time to gyrate atrophy and cover lab materials.
Can you:
Share this on Facebook, Twitter, Instagram
Send emails to your friends and family asking for their support
Ask local businesses, especially related to vision, to sponsor our event
You can help cure blindness in our family and so many others!
You can help cure blindness!
We’ve already raised $46,000 to cure gyrate atrophy!
Did you catch the news from the UK that the NHS will cover gene therapy treatment with Luxturna? Jean Bennett who developed Luxturna with her team is now working on gyrate atrophy thanks to a grant from us, Conquering Gyrate Atrophy. While it is a long road, this gives us hope.
Thanks to many of you, we have already raised $46,000! The funds we are raising will support researchers working on a cure for gyrate atrophy. We are partnering with Beyond Our Sight to produce a virtual experience on May 22, 2021 at 5pm Eastern Time (UTC-5) to gain a greater understanding and empathy for visual impairment, and support research to cure blindness.
Led by visually impaired and blind hosts, participants will wear a blindfold and perform some simple tasks (though much harder with a blindfold). They will reflect on their experience and be able to ask questions of the host on how they navigate the world with blindness. This will be held over zoom.
We have the researchers, we have the scientific foundation, we have the patient community. A cure is within sight. We need funds. The moment is now.
Please buy a ticket and share this event with others. If you can't make the event, consider making a donation. All tickets and donations are tax deductible in the US and 100% go towards research for gyrate atrophy.
You can help cure blindness in our families and so many others. Please share the link with friends and family and please buy a ticket to the event or donate.
Zoom recording and next steps for GA fundraiser
Next steps on the Beyond Our Sight Fundraiser
Dear Patients and Families of gyrate atrophy,
Ten families affected by gyrate atrophy came together by zoom yesterday. It was really fantastic with people from Australia, United Kingdom, Netherlands, Mexico, Abu Dhabi, South Africa, United States! Amazing!
Can you help with the next steps on the Beyond Our Sight Fundraiser?
1. Start a team. A prize goes to Tracey for creating the first team! I hope each of you will start a team. It costs nothing but will encourage your friends and family to support a cause you care about. I can even create one for you so you have your own page to send out. Just let me know.
2. Ask friends and family to buy tickets, even if you don’t want to create a team. Here is a link for an email template that you can edit to send out, whether you create a team or not. Note you will need to download it to edit it.(https://drive.google.com/file/d/196ZyJg9OmAiI7aQ6B8_CkpV0OMRfFq3A/view?usp=sharing)
3. If you're on Facebook or Twitter, please share the event and include the link to the main page (https://www.flipcause.com/secure/cause_pdetails/MTEyODAy) or your team page.
4. Ask businesses to sponsor the event. See this link for a 2 pager that you can share with businesses. (https://drive.google.com/drive/u/1/folders/1QnqX3ekBsICEqWiSel_Yo2TjLL94e4El)
5. Last here is the recording of our call on April 10.
https://rwjf.zoom.us/rec/share/hM2ox_TkcPMyAR4bQX4sRPjzJ3-oOftBZkdJYKEws67tUAaoJtnrzJUsSefRsIw.9LV-yAQhzEkWPzdx Passcode: S&2z7NmW
Finally, much of this is flexible. If you need a reduced rate for tickets or sponsors, let me know. If you need help with anything at all for this, let us know. We are off to a fantastic start!
Karabi and Malay Acharya, Founders, Conquering Gyrate Atrophy
Gyrate Atrophy Fundraiser Information Session
Conquering Gyrate Atrophy is launching our first fundraiser! The funds will go directly to researchers working on a cure for gyrate atrophy. We are partnering with Beyond Our Sight to produce a virtual experience on May 22, 2021 at 5pm Eastern Time (UTC-5) to gain a greater understanding and empathy for visual impairment, and support research to cure blindness.
Led by visually impaired and blind hosts, participants will wear a blindfold and perform some simple tasks (though much harder with a blindfold). They will reflect on their experience and be able to ask questions of the facilitator on how they navigate the world with blindness. This will be held over zoom.
As patients, friends and family with gyrate atrophy, we need your help to spread the word and encourage people to buy tickets. See the campaign here: https://www.flipcause.com/secure/cause_pdetails/MTEyODAy.
Can you...
Start a team to honor someone with gyrate atrophy and set your own fundraising goal.
Buy tickets
Ask a local business to be a sponsor
Share this event with your friends and family through social media
To learn more, please come to an information session on Saturday April 10, 11:00am EST (UTC-5) on Zoom using the link below:
https://rwjf.zoom.us/j/99866679595?pwd=N0J6Q1B6S3RRU0NYdnN5ZnBHT0dadz09
Let us know if you can join the meeting. If you can not attend and have questions, let us know and we are happy to schedule another time to talk.
Karabi and Malay Acharya, Founders. Conquering Gyrate Atrophy
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