#United States #Chicago #Genetic Testing #Stargardt Disease #Prevent Blindness

Prevent Blindness Declares May as Inherited Retinal Disease Awareness Month

Prevent Blindness, the premier patient advocacy organization focused on safeguarding eye health in the United States, has announced its designation of May as the third annual Inherited Retinal Disease (IRD) and Genetic Testing Month. This initiative aims to educate the public and healthcare professionals about various forms of IRDs, including Stargardt Disease, and emphasizes the essential role of genetic testing.

Understanding Inherited Retinal Diseases

Inherited Retinal Diseases comprise a group of conditions that adversely affect the retina—the critical part of the eye responsible for converting light into neural signals which are sent to the brain to create vision. Some common types of IRDs include:

• - Achromatopsia
• - Choroideremia
• - Cone-Rod Dystrophy
• - Leber Congenital Amaurosis
• - Retinitis Pigmentosa (RP)
• - Stargardt Disease

Genetic testing is a vital tool that allows healthcare providers to identify these disorders early, facilitating prompt diagnosis and treatment strategies. Additionally, genetic insights can guide patients towards participating in clinical trials for novel therapies that may potentially restore vision.

Jeff Todd, the president and CEO of Prevent Blindness, expressed optimism regarding the ongoing research into new sight-saving treatments. He stated, "Promising research on new sight-saving treatments and therapies is currently underway to help prevent significant vision loss from several IRDs. By accessing eyecare and undergoing genetic testing, patients can partner with their healthcare teams to save their sight and provide critical information to their families."

Stargardt Disease Awareness Week

This year, Prevent Blindness has designated the third week of May (May 18-24) as Stargardt Disease Week. This focused initiative aims to provide targeted education and resources for individuals affected by Stargardt Disease, also known as juvenile macular degeneration.

The organization will provide a variety of free resources, including a dedicated webpage, informative fact sheets available in English and Spanish, and engaging videos. Notably, a new patient video showcasing Havah Fleisner, a 17-year-old advocate competing in pageants under the theme "Through Her Eyes Living Life Legally Blind," will be launched. Also, the May episode of the Prevent Blindness Focus on Eye Health Podcast features Ellen Gould, an Emmy Award-winning writer, who discusses her experiences living with Stargardt Disease and the musical she created entitled "Seeing Stars."

Prevent Blindness has curated a comprehensive range of videos focusing on IRDs, featuring expert discussions and patient experiences, including:

• - Stargardt Disease: A Conversation with Bryan and Bradford Manning of Two Blind Brothers
• - Inherited Retinal Disorders and Genetic Testing, with Alina V. Dumitrescu, MD
• - RP videos highlighting the stories of participants in the Prevent Blindness ASPECT Patient Engagement Program.

Resources for All

To explore more about inherited retinal diseases and the significance of genetic testing, visit PreventBlindness.org/inherited-retinal-diseases. For specific information on Stargardt disease, please visit PreventBlindness.org/stargardt-disease. Additionally, resources for vision care financial assistance programs are available in both English and Spanish at PreventBlindness.org/vision-care-financial-assistance-information.

About Prevent Blindness

Prevent Blindness is dedicated to preventing blindness and preserving sight through awareness, advocacy, and educational initiatives about eye health and its critical connection to overall well-being. The organization engages with diverse stakeholders, including volunteers, affiliates, and the public, to provide free resources covering a wide range of eye diseases and conditions. For more details, explore PreventBlindness.org and connect with them on social media platforms such as Facebook, X, Instagram, LinkedIn, TikTok, and YouTube.