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  1. My RP Secret

    My name is Dave Steele. I’m a singer and poet from the UK who, since being diagnosed with retinitis pigmentosa in 2013, has dedicated my life to raising awareness for visually impaired people worldwide through poetry and music. Following is a poem I wrote for my daughter, Ellie. The Secret It took me years to come to terms with how my eyes declined Through stages of acceptance of slowly going blind But nothing I could ever do would allow me to prepare To tell my little girl the thing I…

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  2. Limited Sight. Purposeful Vision.

    Hi, my name is Erica Powell! I am a fitness professional, marathon runner and national keynote speaker. #MyBlindStory started when I was 6 months old. I was diagnosed with a rare cancer called retinoblastoma-bilateral – cancerous tumors in my retinas. After numerous operations and aggressive treatment, I have now been cancer-free for over 20 years! But as a result of my radiation treatment, I have been experiencing progressive vision loss throughout my entire life. My vision really started to decline as I was hitting my teenage high school years, and…

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  3. When It Comes to Demanding Access, Take the Big Swing

    I am a 14 year old blind skier, horseback rider, cross-country runner, Challenger Little League baseball player, singer, musician, voiceover artist, radio personality, advocate, student lobsterman and geek supreme from a small fishing village named Beals Island, Maine. Oh, and one more thing you should know, I’m a huge Boston Red Sox fan! I was born totally blind from a rare genetic condition known as Leber’s congenital amaurosis (LCA); because of this, I’ve been thrown lots of curveballs in my life. I’ve been bullied in school to the point of…

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  4. Not Just A Smart Cane – a Movement to Raise Role Models

    Young Guru Academy (YGA) is a non-profit organization founded in Turkey in 2000 that cultivates selfless leaders to realize the dream of a brighter future for the younger generations. One of the program’s graduates, Kürşat Ceylan, has emerged as an award-winning social entrepreneur who has spoken at the United Nations – and who is still leading the technologies that YGA develops, specifically those for visually impaired people. “YGA works on breakthrough social innovations to inspire people and give hope. Our latest technology is WeWALK, a revolutionary smart cane for the…

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  5. Our Nystagmus Story

    When my baby daughter was 6 weeks old, somebody wearing a white coat told me she was blind. She wasn’t blind. I knew that. But I also knew there was something wrong with her eyes. It turned out to be nystagmus. I’d never heard of it before. From that day on, our nystagmus journey began. Nystagmus is characterized by uncontrolled eye movements, which make focusing very difficult. It is a lifelong condition and cannot be corrected with glasses or contact lenses. Most people with this condition have impaired depth and…

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  6. Paralympic Powerhouse: Menna and Jen

    Meet Jen My name is Jen and – unusually enough for #MyBlindStory – I’m not blind. I’m sighted (albeit short-sighted) and I’m a serving Officer in the Royal Engineers. I was released from traditional military duties for two years after being scouted as a sighted ski guide for para alpine athlete Menna. However, although I’m not blind, visual impairment and blindness has had a huge impact on my world. As a teenager, I sailed competitively – and once continued in a race even after my glasses were knocked off part-way…

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  7. Renegades

    “Long live the pioneers Rebels and mutineers Go forth and have no fear… It’s our time to make a move It’s our time to make amends It’s our time to break the rules Let’s begin” –X Ambassadors, Renegades   Earlier this month, I was at the X Ambassadors concert here in Minneapolis. I have been a fan since I first heard them. I went with my family, friends and a few people from the Louie’s Vision Board of Directors. The show was above and beyond what I could have expected….

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  8. Strong, Comfortable, Confident – and Ready to Do It Again

    My name is Begoña Manterola and I’m from San Sebastian in the Basque Country of North Spain. I used to work as a hairdresser. When I was 35, doctors told me I had Retinitis Pigmentosa – but it wasn’t until I was 50 that I had to stop working because I was becoming completely blind. Since then, I have focused my life on reinforcing my personal growth. I do theatre, yoga, Pilates and hiking. Recently, I decided to tackle a new adventure – snowshoeing.   On this trip, we snowshoed…

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  9. Why I Learned to SEE: Set Extraordinary Expectations

    My three children, two sons and a daughter, are typical teenage kiddos. They go to public school. They play sports. They have friends. They often stay up too late, keep their rooms quite messy, and talk back to me every now and again. Yep, pretty typical. But my kiddos also each have a certain, not-so-typical aspect that makes them, well, them. Many people describe my children as extraordinary. But I don’t. High achievers? Yes. Resilient? You bet. But extraordinary? No. However, it is my expectations for them and their expectations…

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  10. Trail Blazing the World of Blind Skimboarding

    My name is Kai Owens, and I have an aggressive form of Retinitis Pigmentosa (RP). RP is a form of vision loss that causes night blindness, blind spots known as scotomas, and loss of central acuity and peripheral vision. After being diagnosed in the third grade, I began learning braille, typing, and screen reading computer software – and I decided that no matter what happened, I wasn’t going to let it stop me from doing what I wanted to do. Ever since I was a young kid I have been…

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