May | 2024

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What You Need to Know about Inherited Retinal Diseases and Genetic Testing

Inherited Retinal Diseases are a group of diseases that can cause severe vision loss or even blindness.

Prevent Blindness has designated May as the first-ever Inherited Retinal Diseases (IRD) and Genetic Testing Awareness Month.

The goal of this initiative is to educate patients and families on various forms of IRDs and the importance of genetic testing to confirm diagnosis and possible treatments. Resources available to the public include a free webinar, expert and patient videos, shareable social media graphics, and fact sheets in English and Spanish. IRD Genetic Testing Awareness Month is supported by funding from Johnson & Johnson, and Spark® Therapeutics.

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Inherited Retinal Diseases Include:

Choroideremia – a progressive loss of cells in the retina, the light-sensitive layer of tissue at the back of the eye, and the nearby network of blood vessels, called the choroid.

Cone-rod Dystrophy – a group of more than 30 IRDs that affect the cones and rods, the light sensitive cells found in the retina.

Leber Congenital Amaurosis – a rare disorder that affects both the peripheral rod cells, central cone cells, and is the most common cause of inherited blindness in childhood.

Retinitis Pigmentosa (RP) – also known as hereditary retinal dystrophy, a group of related eye disorders caused by variations in 60 genes that affect the retina. It is the most common inherited disease of the retina.

Stargardt Disease – also called Stargardt macular dystrophy, the disease causes damage to the macula, a small area in the center of the retina that is responsible for sharp, straight-ahead vision. The disease typically causes central vision loss during childhood or adolescence.

Pathways to Diagnosis: Genetic Testing for Inherited Retinal Diseases, 5/29/2024 - 2-3pm ET - registration is free
Register Today!

Prevent Blindness Announces Recipients of the 2024 Jenny Pomeroy Award for Excellence in Vision and Public Health, and the Rising Visionary Award

These award recipients were chosen by a volunteer selection committee, consisting of leading professionals in ophthalmology, optometry, advocacy, public health, and scientific communities. Both award recipients will present at the 13th Annual Prevent Blindness Focus on Eye Health Summit.

Mision for Vision logo

Recipient of the 2024 Jenny Pomeroy Award for Excellence in Vision and Public Health

Founded in the year 2000, Mission for Vision seeks to restore the gift of vision to every visually impaired human being, irrespective of nationality, religion or socio-economic status. To date, MFV has positively impacted the lives of more than 19.7 million people in India, including the enablement of more than 3 million eye surgeries. MFV works in 24 Indian states and union territories with leading eye health partners.

Erica Shelton, OD, MS, FAAO, Clinical Instructor and PhD Candidate, The Ohio State University College of Optometry

Erica Shelton, OD, MS, FAAO, Clinical Instructor and PhD Candidate, The Ohio State University College of Optometry, Recipient of the 2024 Rising Visionary Award

Dr. Shelton was recognized for submitting the best essay based on the 2024 Focus on Eye Health Summit theme, “Being Seen and Heard.” Her essay emphasized the significance of supporting strong school-based vision programs (SBVP).

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Join Us for the Focus on Eye Health Summit!

13tgh Annual Focus on Eye Health Summit, July 10-11, 2024, Being Seen and Heard

Prevent Blindness will host the 13th annual Focus on Eye Health Summit on July 10-11, 2024, as a FREE virtual interactive event. This year’s theme – “Being Seen and Heard” – emphasizes the importance of a person-centered approach to vision health interventions, research, communications, and care.


DAY 1:

  • Keynote Presentation: The Patient Voice & Reaction Panel 
  • Vision Research and the Citizen Scientist
  • Presentation of the 2024 Jenny Pomeroy Award for Excellence in Vision and Public Health
  • Seeing and Hearing Children's Vision Needs
  • Presentation of the 2024 Rising Visionary Award

DAY 2:

  • Keynote Fireside Chat: The Human Side of AI in Healthcare
  • The Many Eyes in Artificial Intelligence
  • Visible Voices: Vignettes of Being Seen and Heard

Keynote Speakers

Stacy B. Lee, JD Professor of Law and Ethics at the Johns Hopkins University Carey Business School (with a joint appointment at the Bloomberg School of Public Health)

Stacey B. Lee, JD

Professor of Law and Ethics, Johns Hopkins University Carey Business School/Bloomberg School of Public Health

Brian Anderson, MD Chief Executive Officer, Coalition for Health AI (CHAI)

Brian Anderson, MD

Chief Executive Officer, Coalition for Health AI (CHAI)

Randall L. Rutta Chief Executive Officer, National Health Council

Randall L. Rutta

Chief Executive Officer, National Health Council

Register Today!
Children's Vision and Parent Advocacy with Dr. Lauren Ditta

Kira Baldonado, Vice President of Public Health and Policy at Prevent Blindness, discusses children's vision, vision impairment, and advocating for patients with Lauren C. Ditta, MD, Pediatric Neuro-Ophthalmologist at Le Bonheur Children's Hospital and Associate Professor of Ophthalmology and Pediatrics at Hamilton Eye Institute, University of Tennessee Health Science Center.

Watch the Video

Upcoming Event

2024 Prevent Blindness x Vision Ireland Golf Classic - May 20, 2024, Wykagyl Country Club, New Rochelle, NY

TAD Foundation, Prevent Blindness, and Vision Ireland are excited to welcome you to Wykagyl Country Club for the 2nd annual New York Golf Classic on Monday, May 20, 2024. This is a full day fundraising event that will include lunch, golf, and drinks, followed by the event program and auction.

Join Us!

Sponsored Content

New Hope for Geographic Atrophy: An Expert Discussion of Key Practice Changes

A 1.0-hour CME activity for retina specialists and other eye care providers who are interested in the management of patients with geographic atrophy.

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a patient talking with a healthcare professional

Clinical Research Study

We are sharing an opportunity to participate in a clinical research study being conducted by Janssen Research & Development, LLC.


The purpose of this study is to learn more about the safety and efficacy of an investigational gene therapy for adults with geographic atrophy (GA) caused by age-related macular degeneration (AMD).


The investigational gene therapy is given through a one-time intravitreal injection, which is an injection delivered into the gel-like fluid interior of the eye. This type of injection is a common procedure for people with various eye conditions.


You may be eligible to participate in this study if you:

  • Are 60 years of age or older
  • Have GA caused by AMD


Additional eligibility criteria will apply. Not all individuals with GA may qualify to participate in this study.


If you would like to learn more about this study or to check if you may be eligible to participate, please visit the study site.

PARASOL Geographic Atrophy Study
Janssen Pharmaceuticals

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