Foundation Fighting Blindness

04/16/2026

Spotlight on Retinitis Pigmentosa (RP) 👁️‍🗨️

Retinitis pigmentosa is a group of inherited retinal diseases caused by mutations in more than 80 genes. That’s why genetic testing is so important — it helps people understand the specific cause of their RP and may help connect them to research studies and emerging treatment opportunities.

Through the Foundation Fighting Blindness My Retina Tracker® Program, individuals with inherited retinal diseases may be eligible for no-cost genetic testing and counseling.

Learn more at: www.FightingBlindness.org/open-access-genetic-testing-program

Video Description: Dark blue background with the Foundation Fighting Blindness and Spotlight on RP logos top-left. Text below that reads, "Retinitis pigmentosa is a group of inherited retinal diseases caused by mutations in more than 80 genes." A spiraling blue and purple DNA strand at the bottom.

04/15/2026

Less than two months until United in Vision 2026!

On June 12–13, our global community will come together for two days dedicated to science, collaboration, and progress as the Foundation Fighting Blindness Visions Conference and Retina International World Congress unite in one powerful event.

Join patients, families, researchers, clinicians, and advocates from around the world as we focus on advancing research toward treatments and cures for blinding diseases.

This is where our community connects — and where progress moves forward.

Secure your spot today: https://bit.ly/4lxn3PL

Video Description: Dark blue background with United in Vision 2026 logo top center. Text below reads "Friday and Saturday, June 12 to 13. Fort Worth, Texas." Video montage of clips from past participants.

04/14/2026

Spotlight on Retinitis Pigmentosa (RP) 👁️‍🗨️

Retinitis pigmentosa is an inherited retinal disease often diagnosed in childhood or adolescence. It typically starts by affecting the retina’s rod photoreceptors — the cells that help us see at night and in our peripheral vision. As RP progresses, people may experience symptoms like night blindness and tunnel vision.

Through the support of our community, researchers are advancing promising work to bring treatments and cures for RP forward.
Learn more about RP and the progress being made: www.FightingBlindness.org/diseases/retinitis-pigmentosa

Image Description: Dark blue background with the Foundation Fighting Blindness and Spotlight on Retinitis Pigmentosa logos top-left. Text below that reads, "RP initially affects rod photoreceptors, leading to night blindness and tunnel vision." An illustration of two eyes below, the left showing an unaffected retina, the right showing a retina with affected rods.

What is Retinitis Pigmentosa? Learn about the signs and symptoms of the retinal condition retinitis pigmentosa, as well as how to live with the disease. (juvenile eye disease)

04/13/2026

This week, we’re shining a Spotlight on Retinitis Pigmentosa (RP)—starting with Madison Maidenberg. 👁️‍🗨️

When Madison appeared on Love Is Blind, she challenged more than dating norms—she challenged assumptions about blindness.

Living with RP, she’s showing that vision loss is a spectrum, and that independence, ambition, and identity don’t disappear with a diagnosis.
Now, as a leader in the Foundation Fighting Blindness community, she’s helping drive the research that’s advancing treatments and cures for blinding diseases, while reminding others they’re not alone.

Watch how she’s turning visibility into impact, and read her Beacon Story at: www.FightingBlindness.org/stories/seen-at-last-1321

Video Description: Madison sits in a chair in front of a solid back drop and speaks directly to the camera. Clips and photos from Madison's life and time on Love is Blind appear throughout.

04/09/2026

Interested in sharing your experience and perspectives as an individual living with geographic atrophy (GA) or age-related macular degeneration (AMD)?

Individuals living with GA, an advanced form of AMD, are invited to share their experiences as part of a Patient Advisory Council supported by a pharmaceutical company. The council will bring together a group of adults over the age of 50 and diagnosed with GA to participate in virtual discussions about their patient journey and provide feedback on topics based on their lived experiences with GA.

Participation involves a limited number of virtual sessions via Zoom and online-based surveys, with no travel required.

If you are interested, please complete a brief pre-screening survey by April 30 by visiting https://bit.ly/4tsVpHV.

Select respondents will be contacted by Julia Rodger (jrodger@vozadvisors.com) to schedule a brief introductory call. Following the introductory call, selected individuals will be invited to join the Council and compensated for their time.

If you have AMD but not GA, you are still welcome to take the screener survey; we will keep your information on file and reach out about other opportunities that could be a good fit for you in the future.

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 "Share your experience with geographic atrophy (GA) or AMD as a potential Patient Council advisor."

04/08/2026

Join us in New York on May 14 for Night for Sight, an unforgettable evening dedicated to accelerating research toward treatments and cures for blinding diseases. We’re honored to welcome Brad and Bryan of Two Blind Brothers to Guastavino's for a powerful night of connection and purpose.

Together, we’ll celebrate the strength of our community and raise critical funds to move research forward.

We hope to see you there! https://bit.ly/4c1dBlW

Video Description: Bryan and Brad stand in a green room and speak directly to the camera, selfie-style.

04/07/2026

On , we recognize that whole-body health includes mental health, especially for those navigating vision loss. That's why we created our Mental Health Resource Center, built specifically for the blind and low vision community. 💙

And stay tuned, with Mental Health Awareness Month just around the corner in May, we'll have even more resources and stories to share.

www.FightingBlindness.org/mental-health

Image Description: Dark blue background with Foundation Fighting Blindness logo top left followed by text that reads "Mental Health Resource Center." Two hands holding a smart phone showing the Mental Health Resource Center webpage. Text to the right that reads "Built specifically for the blind and low vision community."

04/06/2026

🚨 Today is the last day to save.

Get 10% off registration for the United in Vision Conference before the Flash Sale ends tonight.

Join individuals, families, researchers, clinicians, and advocates June 12–13 in Fort Worth for two days of cutting-edge research updates, expert-led sessions on navigating vision loss, interactive exhibits featuring assistive technology, and powerful connection with a community driving progress toward treatments and cures for blinding diseases.

If you’ve been thinking about joining us, now’s the moment. Register before the discount ends: https://bit.ly/4lxn3PL

Image Description: United in Visions 2026 logo centered at the top with text below that reads "Flash Sale Ends Tonight!" Five individuals standing together in front of a Foundation step-and-repeat. Blue gradient banner diagonally across the bottom with text that reads "Fort Worth, Texas. June 12 - 13, 2026."

04/03/2026

Last month, two incredible VisionWalk communities—Dallas-Fort Worth and Arizona—came together to kick off our VisionWalk season with one shared mission: to drive research toward preventions, treatments, and cures for blinding diseases.

Together, they rallied 577 participants and raised more than $94,000 in support of the Foundation’s mission. 💙

We’re also proud to celebrate Fai Mo, who was presented with the Team Ashley Award at the Arizona VisionWalk in recognition of his exceptional service, commitment, and fundraising.

A huge thank you to our amazing sponsors for helping make these events possible: Medivant, 4D8 Electric, and Keenova.

Image Description: [Slide one] A man and woman stand at the beginning of the VisionWalk route. The woman is holding giant scissors that were just used to cut the starting line ribbon. Participants in the background cheer and raise pompoms in the air. [Slide two] Members of team Fai's Eyes, including Fai Mo, come together to take a selfie in front of the VisionWalk flag. [Slide three] Fai Mo stands on stage and speaks to a large crowd of VisionWalkers.

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.