Episódios
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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.
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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 interpreting the results of a genetic test—and how empowering it can be for the person, their family, and their future. Learn more from Stephen Daiger on the importance of genetic testing at EyeWant2Know.com.
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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. An ambassador for Hope in Focus, Lincoln reveals how overwhelming the process was at times, and how she found support through the online IRD Community. Learn more about the power of genetic testing at EyeWant2Know.com.
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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. Learn more about Steve and Kacey’s journey at EyeWant2Know.com.