Eye Know—Do You? Podcast

Voices of support and strength

With compelling storylines and the latest data about genetic testing, the Eye Know—Do You? Podcast explores daily life for those living with an inherited retinal disease (IRD). From everyday folks experiencing vision loss to scientists and specialists at the forefront of IRD research, each episode brings new stories and successes to life. Take a listen!

 

Some speakers have been compensated for their time.

ABOUT THE HOSTS

Bradford and Bryan Manning

Diagnosed with Stargardt disease as boys, Bradford and Bryan are known for their advocacy and charitable work in the IRD community. Their Two Blind Brothers clothing line donates 100% of its profits to medical research, and Bradford serves on the board of Foundation Fighting Blindness, a research nonprofit. With frank observations and good humor, they bring a relaxed, conversational tone to the podcast.

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Some of Season 3’s guests share their stories about getting genetically tested, while others chat in depth about the thrilling science behind it.

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EPISODE 4: READY FOR SCIENCE

The brothers chat with Ken Getz, a Tufts University School of Medicine professor and founder of CISCRP, which helps the general public understand the clinical research process, including those living with an IRD. He discusses the benefits and risks of clinical trials, and the value of participation in research. To learn more, visit
Foundation Fighting Blindness.

EPISODE 3: UNDERSTANDING GENETIC TEST RESULTS

After discussing how genetic testing has evolved, Stephen Daiger, PhD, Director of the Laboratory for Molecular Diagnosis of Inherited Eye Diseases at the University of Texas at Houston, and Emily Place, MS, LCGC, a genetic counselor from Boston’s Massachusetts Eye and Ear, talk about the process of getting a genetic test—and how empowering it can be for the person, their family, and their future.

EPISODE 2: RECEIVING GENETIC TEST RESULTS

With optimism and a positive attitude, Ashlyn Lincoln tells the story of how her newborn son, Gunner, who showed signs of vision loss, eventually received a genetic test—and how the results affected the family. A retina specialist diagnosed Gunner with Leber congenital amaurosis (LCA), a rare, inherited eye disorder. Lincoln reveals how overwhelming the process was at times, and how she found support through the online IRD Community.

EPISODE 1: PURSUING A GENETIC TEST

Diagnosed with an IRD as a Marine in the early 2000s, Steve Walker received a medical discharge and went on to become an Ironman Triathlete. He and his wife, Kacey, walk listeners though the steps of his own experience with genetic testing, from learning about it, to getting the test, to the difference the results made for their families. A powerful reminder of how getting the right information can change many lives.

Eye Want 2 Know…

How to get a genetic test for IRDs

Explore testing options

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