Choroideremia Research Foundation

Choroideremia Research Foundation Building Hope Is How We'll Get There.

International non-profit dedicated to raising funds to find a treatment or cure for choroideremia (CHM).

🌎 World's Largest CHM Organization
🔬 $6M+ Invested in Research Since 2000

Saving Sight Is Our Vision.

Today is the official release of Never Lose Sight: Finding My Way Back to Hope Through Vision Loss, Grief, and Clay by A...
08/28/2026

Today is the official release of Never Lose Sight: Finding My Way Back to Hope Through Vision Loss, Grief, and Clay by Angela Ricketts, founder of Sight Stones.

In this deeply personal book, Angela shares her family’s journey after her five-year-old son Kai was diagnosed with choroideremia, the same disease that had taken his great-grandfather’s sight two generations earlier. As her family navigates vision loss, grief, and uncertainty, Angela finds comfort and purpose in returning to clay, eventually creating the Sight Stones now carried by thousands of people.

Sight Stones is committed to helping find and fund cures for rare retinal eye diseases. Proceeds from the book will fund Sight Stones and research directed by the Choroideremia Research Foundation (CRF).

đź“– Now available on Amazon: https://www.amazon.com/dp/B0HGTYCWF2

đź“° Read the full press release:
https://www.einpresswire.com/article/937590496/angela-ricketts-shares-her-family-s-choroideremia-journey-in-new-book-never-lose-sight

St. Louis author and Sight Stones founder highlights hope, resilience, and purpose following her son’s diagnosis with a rare inherited retinal disease.

CRF Chief Scientific Officer Update: PRIMA2, A New Frontier in Vision RestorationMany in the choroideremia (CHM) communi...
08/27/2026

CRF Chief Scientific Officer Update: PRIMA2, A New Frontier in Vision Restoration

Many in the choroideremia (CHM) community have recently asked about PRIMA2, a retinal implant being developed to restore a degree of vision for people with advanced retinal disease. The Choroideremia Research Foundation (CRF) recently spoke with leaders from Science Corporation, the company developing PRIMA2, to learn more about the technology and its potential relevance to people with CHM.

Our Chief Scientific Officer, Mike McConnell, PhD, shares his perspective:

At a fundamental level, vision is what your brain constructs from the electrical signals it receives from the retina. The challenge facing vision prosthetic scientists has been to convert the light in our environment into a series of electrical signals that the brain can interpret as vision. In July, Science Corporation received European approval for their PRIMA2 device, which solves this challenge. The US FDA is expected to weigh in soon too.

PRIMA2 has two components, glasses and a retinal implant. No wires or batteries. The same environmental light that’s being interpreted for vision powers everything. Tested first in AMD patients with geographic atrophy and very low vision, 80% of patients could read numbers, letters, and words with an average of 5 lines of improvement on the vision chart. Some of these patients could report “That’s an A” as soon as the device was turned on.

A simulator of what these patients see is available at: prima.science.xyz. This illustrates black-and-white vision in the center of the visual field and the ability to read the number and suit of playing cards.

CRF learned more about the potential for CHMers with little or no light perception. Because AMD and CHM progress differently (i.e., inside-out vs. outside-in), the outcome of ongoing trials in retinitis pigmentosa (RP) patients should provide more meaningful guidance for CHMers. CRF will keep you updated!

I think of CRF priorities in three buckets: prevent CHM, stabilize CHM, and restore vision to late-stage CHMers. The majority of our funded research programs address the first two buckets because visual prosthetics have been the stuff of Star Trek and science fiction. With Science Corporation’s PRIMA2, the central technology for prosthetic vision is no longer fiction, it exists and it does what it does.

It is too early to get very excited, but it is clear that the vision restoration bucket is beginning to hold some water.

Read the full recent reporting on European approval of PRIMA2 from BrightFocus Foundation: https://www.brightfocus.org/resource/prima-implant-brings-vision-restoration-within-reach

Now available in Europe, the PRIMA implantable device may help improve vision in advanced age-related macular degeneration. Learn how it works and when it could be available in the U.S.

08/25/2026

Parents, this one is for you. đź’™

A choroideremia (CHM) diagnosis for your child can leave you with more questions than answers. There’s no “how-to” guide for processing the emotions, navigating the unknown, or knowing what comes next.

But you can choose what you do with that uncertainty.

You can dream about a future where treatments and a cure are possible, and work toward making that future a reality.

There may not be all the answers today. But there is hope, there is research, and there is a community working toward a better tomorrow.

UPCOMING WEBINAR: Resources & Skill Development for CHMers with the Carroll Center for the BlindLooking to build skills,...
08/24/2026

UPCOMING WEBINAR: Resources & Skill Development for CHMers with the Carroll Center for the Blind

Looking to build skills, explore career opportunities, or gain greater independence? Join us for an introduction to the Carroll Center for the Blind on Thursday, August 27, from 2–3:15 p.m. ET.

Learn more about programs and services, including:

🔹 2-week assessment program - identify individual strengths, goals, and training needs
🔹 12-week job readiness program - develop skills and prepare for employment success
🔹 20-week vocational transition program - build independence, explore career options, and prepare for the next steps in your educational or professional journey

Whether you’re exploring resources for yourself or a family member, this session will offer insight into the training, support, and opportunities available through the Carroll Center.

Register today to learn more!
https://secure.qgiv.com/for/crfwebinars/event/register/

08/21/2026

For Angela Ricketts, processing her son Kai’s choroideremia (CHM) diagnosis meant recognizing a feeling she didn’t expect: grief.

Hear more from Angela in her new book, Never Lose Sight: A Journey of Vision Loss, Grief, and Finding Hope in Clay, releasing August 28.

YOU’RE INVITED, CHM COMMUNITY! Join the Choroideremia Research Foundation for a free, in-person CHM Patient & Family Mee...
08/20/2026

YOU’RE INVITED, CHM COMMUNITY!

Join the Choroideremia Research Foundation for a free, in-person CHM Patient & Family Meeting on Saturday, November 14, 2026, at the SUNY College of Optometry in New York City. đź—˝

This regional gathering is a chance for individuals with CHM, family members, and friends from across the East Coast and beyond to come together to connect, learn, and discover local resources.

We’re excited to welcome John-Ross Rizzo, MD, PhD, CRF Board Member, and Steven Tsang, MD, PhD, CRF Scientific Advisory Board Member, along with experts and representatives from organizations serving the greater NYC community.

Whether you’re nearby or traveling from farther away, all members of the CHM community are welcome!

Register today and join us in NYC: https://secure.qgiv.com/for/newyorkcitychmpatientandfamilymeeting/event/suny/

Jacques Tuset completed his Prison Break series of swims in Boston Harbor in support of France Choroïdérémie. 🏊‍♂️Known ...
08/18/2026

Jacques Tuset completed his Prison Break series of swims in Boston Harbor in support of France Choroïdérémie. 🏊‍♂️

Known as the “King of Prison Island Swimming,” Jacques has been using his swims since 1999 to raise awareness and funds for choroideremia (CHM) and vision loss research.

Thank you, Jacques, for using your passion to help shine a light on CHM!



A 62-year-old swimmer just conquered four former Boston Harbor prisons in one outing — for a cause much bigger than the tide.

08/17/2026

Before attending a CRF International Conference, Angela Ricketts, mom to Kai, who lives with choroideremia (CHM), was searching for the right words to help her son navigate his vision loss.

That journey will be shared through Angela’s new book, Never Lose Sight: A Journey of Vision Loss, Grief, and Finding Hope in Clay, releasing August 28.

Proceeds will support inherited retinal disease research, including research supported by the CRF.

Follow along as we share more of Angela and Kai’s story leading up to the launch.

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