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Displaying 71–80 of 189 diseases results
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Blind Author with Usher Syndrome Ignites the Literary World
Beacon StoriesAt the age of 22, Michael Garrigan received a life-changing diagnosis of Usher syndrome type 2. His vision gradually deteriorated over the years, and by the age of 45, he faced the reality of being legally blind. Determined to share his story and shed light on the capacity to triumph over darkness, Michael penned a remarkable memoir, “Ushered Out of Darkness,” in which he invites readers into his most vulnerable life moments and victories.
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Why Bob and Lupe Reintsma are Supporting the Foundation Fighting Blindness
Beacon StoriesBob Reintsma has been passionate about finding cures for inherited retinal diseases for most of his life. Now, he and his wife, Lupe, want to make sure the work continues long after they’re gone. And they’re doing it in partnership with Foundation Fighting Blindness.
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Beyond Labels: The Inspiring Journey of a Refsum Disease Advocate
Beacon StoriesAfter years of seeking answers, Alan Gunzburg was formally diagnosed with Refsum disease, a rare genetic disorder. Drawing on his unique journey, Alan sheds light on the obstacles he’s faced and how his experience motivated him to make a positive impact in the lives of others.
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Breaking Barriers as an Attorney With Usher Syndrome
Beacon StoriesTara is a woman of extraordinary talents. A beloved twin sister, mother of two, and wife of 10 years, Tara leads a fulfilling life dedicated to advocating for others through law.
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I Am Blind, but I Am Not the Blindness
WellnessDr. Ann Wagner is a Board-Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 23 years, serving veterans and their families. She works primarily on the PTSD Clinical Team providing evidenced-based assessments and interventions for PTSD and other trauma-related problems. Dr. Wagner herself is legally blind due to retinitis pigmentosa.
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Traveling With a Guide Dog: Advice from a Seasoned Traveler
Beacon StoriesInternational Guide Dog Day, April 26th, is extra special to Janni Lehrer-Stein, as she’s celebrating the 5th anniversary of graduating with “the world’s best guide dog,” Shiloh. Janni, who has retinitis pigmentosa, has traveled to five countries outside of the United States with Shiloh and is sharing advice for traveling with a guide dog.
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Beacon Stories
Sean was diagnosed with dry age-related macular degeneration (AMD) in his 40s. Now Sean is using his AMD as an opportunity to educate others about the spectrum of blinding diseases while fundraising for the Foundation Fighting Blindness.
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Evolving With Eyesight and Life
Beacon StoriesGavin was diagnosed with Stargardt disease at the age of 19. In his own words, Gavin shares his experience over the last 13 years adjusting to the unpredictability of his vision loss and how being a new parent has shifted his mindset.
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Blind Paralympian Reaching New Heights
Beacon StoriesIsaac Jean-Paul was diagnosed with X-linked juvenile retinoschisis (XLRS) at the age of two. Isaac was always set on being a professional athlete, and now he’s a Paralympian, winning bronze in the long jump in the 2020 Games and breaking the high jump world record three times.
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Rewriting the Narrative as the First Black Deaf-Blind Journalist
Beacon StoriesSteven McCoy has made history as the first black deaf-blind journalist in the world, as he was recently diagnosed with Usher syndrome after a lifelong struggle with hearing loss. Equipped with a passion for storytelling and advocacy, he now uses his voice to create lasting change within the entertainment industry and deaf-blind community.
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