Choroideremia Research Foundation

10/15/2026

White Cane Safety Day | October 15

A white cane can open the door to greater freedom, mobility, and new possibilities. This White Cane Safety Day, we recognize the importance of creating a more accessible world.

The white cane is more than a tool. It represents freedom, mobility, and self-reliance, helping people navigate daily life on their own terms.

For the choroideremia (CHM) community, mobility training can be valuable even in the early stages of vision loss. Whether someone is experiencing night blindness or beginning to notice changes in their vision, developing navigation skills early can help them adapt to future changes and feel more prepared.

This October 15, let’s raise awareness and encourage access to resources that help people with vision loss travel safely and participate fully in their communities.

10/15/2026

Team CHM Heads to Sydney, Australia!

We’re excited to share that we have secured five charity bibs for the 2027 TCS Sydney Marathon on Sunday, August 29, 2027. Each participant will have a fundraising minimum of $4,000 to support the Choroideremia Research Foundation and its mission to advance research and support the choroideremia (CHM) community.

Interested in joining Team CHM for this exciting international race? Email Kathi Wagner at [email protected] to learn more and express your interest!

10/14/2026

October is Blindness Awareness Month, a dedicated time to educate the public about vision loss, recognize the achievements of people who are blind or have low vision, and promote greater accessibility and inclusion.

But awareness also means challenging misconceptions.

Blindness and low vision don’t look the same for everyone. From how someone experiences vision loss to the tools they use to navigate everyday life, there are many myths that can shape how people perceive blindness, accessibility, and independence.

The more we understand, the more accessible and inclusive our communities can become.

What’s one myth about blindness or low vision you wish more people understood? 💬

10/14/2026

Progression of Macular Tissue Loss in Choroideremia and Its Association with Baseline Fundus Autofluorescence Morphology

This study explores how changes in macular tissue can be measured over a shorter period, potentially helping researchers identify faster ways to determine if a potential therapy is beneficial for CHM.

Proprietary or commercial disclosure may be found in the Footnotes and Disclosures at the end of this article.

10/12/2026

A podcast hosted by CHMer John Powers, Blind and Refined shares his personal journey with choroideremia (CHM), from an unexpected diagnosis at age 28 to navigating vision loss, finding acceptance, and discovering the strength of community and faith.

In the podcast’s latest episode, John welcomes Cory McDonald, formerly known as “Blind Fury,” who helped co-found the Choroideremia Research Foundation (CRF). Their conversation explores advocacy, CHM research, and Cory's commitment to supporting the CHM community.

Tune in to hear their experiences, insights, and perspectives on navigating life with CHM and finding a path forward.

A routine physical for 28 year old John Powers led to an eye specialist informing John that half his sight was gone. He had no idea. A degenerative eye disease (choroideremia) would eventually lead to blindness.  30 years later, John recounts...

10/10/2026

Connect. Learn. Build Community.

Join us for the NYC CHM Patient & Family Meeting on Saturday, November 14th! This free event brings together individuals and families affected by choroideremia (CHM), researchers, vision professionals, and local organizations for a day of learning, resources, and connection.

We’re grateful to welcome representatives from:
- SUNY College of Optometry
- Foundation Fighting Blindness – NY Chapter
- VISIONS / Selis Manor
- New York Public Library
- Helen Keller Services for the Blind
- New York State Commission for the Blind
- Disability Rights New York

📍 SUNY College of Optometry | New York, NY
📅 November 14, 2026 | 8AM–5 PM ET
🎟️ Free to attend, registration required!

Register today and connect with the CHM community:
https://secure.qgiv.com/for/newyorkcitychmpatientandfamilymeeting/event/suny/

10/09/2026

Paths for a Cure: Making Strides Toward Saving Sight!

Orlena Kerek, alongside her family and friends, has stepped up to make a difference through her Team CHM fundraiser, Paths for a Cure! From hosting a Summer Sight Party to organizing the Steps for Sight 100km walk, bike, or swim challenge throughout September, Orlena and her supporters have found meaningful ways to bring people together in support of choroideremia (CHM) research. And they aren't stopping there! They're already planning more ways to keep the fundraising going.

Together, these fundraisers have raised an incredible $8,200+ toward their $100,000 goal! 🎉

To Orlena, her family, her friends, and everyone who has stepped up to help save sight, THANK YOU! Your dedication reminds us what is possible when a community comes together for a cure.

💡 Imagine what we could accomplish together. If 100 people each raised $1,000, we'd reach the $100,000 goal!

Inspired by Paths for a Cure? You can make a difference, too! Join Team CHM and start your own fundraiser today. Every effort brings us one step closer to a future with treatments and a cure for CHM. https://secure.qgiv.com/event/teamchm/

10/09/2026

Meet Neal Bench, CRF President!

Neal Bench, MBA, CPA, is a retired manufacturing finance professional who remains active in nonprofit service through various committees and boards. Living with choroideremia (CHM), Neal has been closely involved with the CHM community and is a dedicated fundraiser for the annual Penn Orphan Disease Center Million Dollar Bike Ride, helping raise funds to support CHM research. In 2021, Neal ran the New York City Marathon as part of Team CHM, with his son, Karsten Bench, serving as his guide.

Neal lives in Chapel Hill, North Carolina, with his wife, Jeanette, who also volunteers at CRF events. Together, they are active supporters of CRF and the families it serves!

10/08/2026

Today is World Sight Day! 🌎

For the millions of people around the world living with blindness and visual impairment, today is about more than raising awareness. It’s about recognizing the challenges that come with vision loss, advancing research and innovation, and working toward a future where people can live with better vision and greater independence.

For the choroideremia (CHM) community, that future is deeply personal.

CHM is a progressive inherited retinal disease that causes vision loss over time. There is currently no approved treatment, but researchers continue to explore new approaches that could change the future for people affected by CHM.

Research takes resources. CRF is committed to funding promising CHM research and supporting the scientists working to answer the questions that could lead to new treatments.

So, on World Sight Day, we’re not just thinking about where we are today. We’re thinking about where we can go next.

Saving Sight Is Our Vision. Building Hope is How We'll Get There.