CHICAGO—Prevent Blindness, the nation’s leading nonprofit eye health and safety organization, has declared May 15 to 21, 2023, as the fourth annual “Inherited Retinal Disease (IRD) Genetic Testing Week.” Founded in 1908, Prevent Blindness is the nation's leading volunteer eye health and safety organization dedicated to fighting blindness and saving sight. An IRD is a genetic disorder that can cause severe vision loss or even blindness. IRDs include retinitis pigmentosa (RP), choroideremia, Stargardt disease, cone-rod dystrophy and Leber congenital amaurosis. Early detection and treatment can help to prevent significant vision loss. Genetic testing is now available to identify many gene variants that cause IRDs.

To help raise awareness and educate the public on IRDs and the importance of genetic testing, Prevent Blindness offers a dedicated web resource, which features educational videos, shareable social media graphics, and fact sheets in English and Spanish.

On Tuesday, May 16, at 3 p.m. EST, the National Center for Children’s Vision and Eye Health at Prevent Blindness will be hosting the free webinar, “Inherited Retinal Diseases and Children’s Vision and Eye Health: What You Need to Know."

This webinar is designed for a wide audience, including parents and families, school nurses, Head Start and other early childhood program staff, early intervention and special education professionals, teachers of students with visual impairments, state vision rehabilitation staff, parent and patient support organizations, primary care providers, and eyecare providers.

Panelists will include:

  • Donna Hunt Hodge, MBA, director of marketing, Retina Gene Therapies, Janssen Pharmaceutical Companies of Johnson & Johnson.

  • Arlene Drack, MD, Ronald Keech professor of pediatric genetic eye disease research and director, electrophysiology, Institute for Vision Research, Department of Ophthalmology and Visual Sciences, University of Iowa.

  • Sherry Day, OD, FAAO, clinical assistant professor, ophthalmology and visual sciences section leader, Vision Care, Contact Lens and Low Vision Rehabilitation, University of Michigan.

  • Kari Branham, MS, CGC, clinical assistant professor, ophthalmology and visual sciences and genetic counselor, Inherited Retinal Dystrophy Clinic, University of Michigan.

  • Mariagrazia Buttitta, MA, NCC, patient with cone dystrophy, and national certified counselor, author, motivational speaker, career coach, wellness and health enthusiast, and mental health and disability advocate.

  • Allison Galloway, FNP-C, MS, SA, parent of two children with LCA13, a childhood degenerative retinal disease and certified family nurse practitioner, master’s prepared in Food and Science, and a certified surgery assistant.
As part of the Prevent Blindness Focus on Eye Health Expert Series, Alina V. Dumitrescu, MD, clinical associate professor of ophthalmology and visual sciences, pediatric ophthalmology and strabismus, inherited eye disease at the University of Iowa Hospitals and Clinics, featured in the episode, “Inherited Retinal Disorders and Genetic Testing" will present.

The event will also feature two graduates of the ASPECT (Advocacy, Support, Perspective, Empowerment, Communication and Training) Patient Engagement Program at Prevent Blindness, sharing their perspective and experience of living with an IRD. Brenda Niccum, who has RP, and Mariagrazia Buttitta, who has cone dystrophy, discuss their conditions as well as ways they manage their vision impairments.

The 2023 IRD Genetic Testing Week at Prevent Blindness is supported by Janssen Pharmaceutical Companies of Johnson & Johnson and Spark Therapeutics, a fully integrated company and member of the Roche group. Janssen offers the EyesOnGenes resource, a comprehensive website for patients and health care providers with information on IRDs, genetic testing benefits, community resources and more. Spark offers educational resources on IRDs and genetic testing through the Eye Want 2 Know website.

“The many recent advancements in treatment for eye diseases have been truly remarkable,” said Jeff Todd, president and CEO of Prevent Blindness. “By providing IRD patients with the resources they need to learn more about their diagnosis, as well as how gene therapy may benefit them, we are working to continue to preserve vision.”

For more information on IRDs and genetic testing for vision issues, visit

To register for the Inherited Retinal Diseases and Children’s Vision and Eye Health: What You Need to Know webinar, visit

For a listing of vision care financial assistance programs in English or Spanish, visit