Inherited retinal disease genetic testing week begins May 15

Prevent Blindness hopes this dedicated week will promote awareness and provide resources understand the impact of genetic testing and treatment options.(Image Credit: Adobe Stock/Cavan)

Prevent Blindness has declared the week of May 15-21 as Inherited Retinal Disease (IRD) Genetic Testing Week to promote awareness and provide resources to understand the impact of genetic testing and treatment options.

According to a press release from the organization, IRDs are genetic disorders that can cause severe vision loss or even blindness, and include Retinitis Pigmentosa (RP), Choroideremia, Stargardt Disease, Cone-rod Dystrophy and Leber Congenital Amaurosis.

With genetic testing now available to identify many gene variants that cause IRDs, early detection and treatment can help to prevent significant vision loss.

Prevent Blindness is offering a dedicated web resource to help raise awareness and educate the public on IRDs and the importance of genetic testing. This includes educational videos, shareable social media graphics, and fact sheets in both English and Spanish.

On Tuesday, May 16, at 3 pm, 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.” According to the organization, this webinar is designed for a wide audience, including parents and families, school nurses, early childhood program staff, teachers of students with visual Impairments, eye care providers and more.

You can register online for the Inherited Retinal Diseases and Children’s Vision and Eye Health: What You Need to Know webinar.

Panelists for the webinar 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, 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

Jeff Todd, president and CEO of Prevent Blindness talked IRDs and the advancement of testing and resources available to increase awareness in the press release.

“The many recent advancements in treatment for eye diseases have been truly remarkable,” said Todd. “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.”

Prevent Blindness strongly encourages patients to talk to their eye doctors about genetic testing. Having the genetic diagnosis will help to identify potential treatment options for patients, inform them about the potential risk of disease to other family members and identify the potential risk to other organs in the patient’s body that may be affected.