Foundation Fighting Blindness

04/02/2026

A new clinical research study is now underway for individuals living with BEST1-associated retinal disease. The BIRD-1 study is evaluating an investigational gene therapy for people diagnosed with BVMD or ARB who have a confirmed BEST1 mutation. Research like this helps move the field forward and brings hope to families affected by inherited retinal diseases. Learn more about eligibility and study details at https://bit.ly/4sOdOPg or email patientsupport@opusgtx.com.

This post is sponsored by Opus Genetics.

Image Description: Dark blue background with the Foundation Fighting Blindness logo at the top, with text below in green that says "Partner News." Below that is the text "Learn about BIRD-1: Gene Therapy Study for BEST1 Disease," followed by the Opus Genetics logo.

04/01/2026

Have you ever worried about coming across as rude — when in reality, you just couldn’t see what others could? Stargardt Coffee Conversations returns with another honest look at life with Stargardt disease.

In this episode, host Adam Chodak connects with Kenyetta McCurdy-Byrd, Chief Operating Officer at REACH Riverside, for a candid conversation about navigating social situations, missing facial cues, and the internal debate around when, and how, to share your vision loss with others.

It’s a powerful reflection on vulnerability, confidence, and finding your own way forward with Stargardt disease.

Watch the full conversation at: www.FightingBlindness.org/startgardt-community-education

This special Stargardt Coffee Conversation episode is sponsored by Alkeus Pharmaceuticals.

Video Description: Kenyetta speaking about encountering people in public settings and not being able to see, while Adam relates. The video concludes with the Foundation Fighting Blindness and Alkeus Pharmaceuticals logos.

03/31/2026

What makes United in Vision 2026 so powerful?

It’s where individuals, families, researchers, clinicians, and advocates come together to share knowledge, experiences, and hope for the future of treatments and cures for blinding diseases.

On June 12–13 in Fort Worth, you’ll hear the latest in science and technology — alongside powerful voices shaping how the world understands vision loss, like Ed Summers. His perspective on navigating independence and everyday life with vision loss is resonating with thousands — and he’ll help open the conference on our technology panel.

And just as important, you’ll find connection and community with people who truly understand the journey.

Right now, registration is 10% off during our Flash Sale — but only until April 6. https://bit.ly/4lxn3PL

Video Description: Ed Summers sits indoors and speaks directly to the camera.

03/30/2026

Richard and Elizabeth Kamis built a life defined by resilience, service, and generosity. After losing much of his vision to retinitis pigmentosa, Richard went on to become the first blind student to graduate from Springfield College, while Elizabeth was by his side as his partner in every sense.

Together, they dedicated their careers to helping others. Through a legacy gift to the Foundation Fighting Blindness, their impact will continue—helping advance research toward treatments and cures for generations to come.

Read more about their story and legacy in our community at: https://bit.ly/4uUVHZn

Image Description: Dark blue background with the Foundation Fighting Blindness logo and "Beacon Story" in the top left corner. Below is Richard and Elizabeth Kamis, with a teal and green gradient border with text on the left, "Richard and Elizabeth Kamis." Text below that reads, "A Legacy of Strength Adaptability and Generosity."

Richard and Elizabeth built a life rooted in resilience, service, and generosity, with Richard’s experience living with retinitis pigmentosa shaping their shared purpose. From breaking barriers in education to careers devoted to helping others, their journey reflects a deep commitment to making a ...

03/25/2026

Reminder! 🚨

Our next Insights Forum takes place tomorrow, March 26, at 11:00 a.m. EDT—a valuable opportunity to hear the latest updates on research progress, mission-driven initiatives, and scientific advancements impacting the blinding disease community.

We’re also pleased to welcome special guest Avril Daly of Retina International, who will share insights and perspectives from the global patient advocacy community.

Don’t miss this chance to stay informed and connected. Register today and come prepared with your questions for our live Q&A. https://bit.ly/4lQX3R0

Image Description: Dark blue background with the Foundation Fighting Blindness logo at the top. Below is the text "Insights Forum, Thursday, March 26, 2026, 11:00 a.m. ET." Geometric lines and a colorful digital wave are featured at the bottom.

03/24/2026

Haydar attended the VISIONS conference in 2024, and shares that the experience was incredible for him and his family, especially as they navigate his daughter’s diagnosis with LCA. Now, he’s inviting others to join him at United in Vision 2026!

For a limited time, save 10% on tickets! Now through April 6, take advantage of special pricing to join us June 12–13 in Fort Worth, Texas, for two days focused on the latest research, meaningful connection, and a shared commitment to advancing treatments and cures for blinding diseases.

Science. Hope. Community. All in one place.

Register before April 6 to secure your discounted rate: https://bit.ly/4lxn3PL

Video Description: Haydar stands indoors, in front of a painting of a mountain scenery and speaks directly to the camera.

03/23/2026

For many people living with blinding diseases, the journey begins in an optometrist’s chair. 👁️

This , we recognize the critical role optometrists play as a first line of care — identifying early signs of vision loss, guiding patients toward answers, and connecting individuals and families to the specialized care and resources they need.

Early detection can make a meaningful difference. Awareness drives action.

To the optometrists who are often the first to say, “Let’s look closer,” thank you for helping patients take the next step toward clarity, care, and progress.

Image Description: Woman wearing glasses and a white coat stands smiling in front of a Snellen Chart. Text in the bottom left corner reads "World Optometry Day" followed by the Foundation Fighting Blindness logo.

03/20/2026

VisionWalk season starts tomorrow.

This weekend, our community will gather in Dallas/Fort Worth and Arizona to kick off the 2026 VisionWalk season — coming together to fund research and move us closer to cures for blinding diseases.
Every step taken and every dollar raised helps drive the science forward.

We can’t wait to see our VisionWalk community in action! Register for a Walk near you today at www.VisionWalk.org

Image Description: Group of VisionWalkers standing at the front of the starting line. Two young Walkers holding a giant pair of scissors, preparing to cut the blue starting ribbon.

03/19/2026

Spotlight on Choroideremia 👁️‍🗨️

Choroideremia is caused by mutations in the CHM gene and primarily affects males, leading to progressive degeneration of the choroid, rods and cones, and the retinal pigment epithelium — gradually impacting vision over time.

Because it is genetic, understanding the role of the CHM gene can help families navigate diagnosis, connect with specialized resources, and stay informed as research advances potential treatments for this blinding disease.

Learn more about choroideremia on our website at: www.FightingBlindness.org/diseases/choroideremia

Image Description: Dark blue background with the Foundation Fighting Blindness and “Spotlight on Choroideremia” logos in the top left corner. Text below reads, "Choroideremia is caused by mutations in the CHM gene and primarily affects males." A light blue DNA strand is breaking apart below.

03/18/2026

Spotlight on Choroideremia 👁️‍🗨️

Did you know that fathers with an X-linked condition will never pass it to their sons? That’s because sons inherit their father’s Y chromosome, not his X.

Choroideremia is inherited in an X-linked pattern, so males (who have one X chromosome) are more likely to be affected, while females (who have two) can carry the gene on one X chromosome without having symptoms.

Carrier mothers have a 50% chance of passing the gene to each child—sons who inherit the gene will be affected, while daughters will become carriers.

Understanding how inherited diseases are passed through families helps drive research toward treatments and cures.

🧬 You can learn even more about choroideremia inheritance on our website at: www.FightingBlindness.org/diseases/choroideremia

Image Description: Dark blue background with the Foundation Fighting Blindness and “Spotlight on Choroideremia” logos in the top left corner. Text below reads, "DID YOU KNOW? Males are more likely to be affected by choroideremia because it is inherited in an X-linked pattern, while females can be carriers."

03/17/2026

Spotlight on Choroideremia 👁️‍🗨️

Early symptoms of choroideremia often include night blindness and gradual peripheral vision loss, while central vision is typically preserved until later stages.

Recognizing these signs can help individuals pursue genetic testing, access support sooner, and stay informed about research advancing potential treatments for this blinding disease.

Learn more about choroideremia symptoms on our website at: www.FightingBlindness.org/diseases/choroideremia

Image Description: Dark blue background with the Foundation Fighting Blindness and Spotlight on Choroideremia logo at the top with text below that says “Vision Related Symptoms.” Below are three stacked images to the left from top to bottom being a dark view of a house at night, a view of a house blurred on the peripheral, and a view of a grocery store aisle blurred in the center. Text to the right of each box reads from top to bottom, “Night blindness,” “Loss of peripheral vision,” “Loss of central vision.”

03/16/2026

This week, we're shining a Spotlight on Choroideremia! 👁️‍🗨️

Meet Cory Rainford, who spent years keeping his vision loss hidden—even from himself.

Diagnosed with choroideremia, Cory quietly navigated school, sports, and a fast-paced career in sports marketing. When his vision declined to less than 10%, he knew it was time to stop hiding and start adapting.

Today, Cory shares his journey through his YouTube channel Legally Blind No Limits, bringing humor, honesty, and heart to conversations about vision loss. From learning to use a white cane to finding community and purpose, he’s showing that life with vision loss can still be full of joy, connection, and possibility.

Read Cory’s Beacon Story and how he turned hiding into helping. https://bit.ly/3NqYw3s

Video Description: Cory talking directly to the camera, holding a tiny microphone, discussing his story with choroideremia.