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Archive for the Guest Bloggers Category

Traveling, Whether It Is Dark or Light

Moira Shea walking with her guide dog, Finnegan, in Barcelona, Spain.In November of 1971, the same year the Foundation Fighting Blindness (FFB) was established, I was diagnosed with Usher syndrome, a disease that causes both hearing and vision loss. I was 15 at the time, and my parents and I quickly became involved with FFB, and over the past 45 years, I’ve been able to meet many others dealing with the fear of blindness.
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One Thing That Scares You

Nicole Kear“Do one thing every day that scares you,” my 10-year-old son told me a few months ago. “That’s what Eleanor Roosevelt said.”

He recently studied the Roosevelts, and, it turns out, the Roosevelts had a lot to say about fear, most famously Franklin in his inaugural address: “The only thing we have to fear is fear itself.”
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Inspired by Progress in Usher Syndrome Research

Dr. Mark PennesiWhen I first heard about Usher syndrome, the leading cause of combined blindness and deafness, I was 19, fresh out of high school and very privileged for the opportunity to work as a summer student at the Retina Foundation of the Southwest with David Birch, Ph.D. I was quite moved by the patients — their eagerness for any kind of treatment and the fear that they might pass their disease on to other family members. That was almost 20 years ago. Back then, we knew very little about the condition, especially its genetic diversity, and there were no foreseeable therapies.
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Lighting a Candle: The Author of a New Memoir Shares the Highs and Lows of Vision Loss

Nicole Kear with cane and bookI was 19 years old when I found out I was losing my vision as a result of a retinal disease called retinitis pigmentosa. Halfway through college, I was perched between girlhood and adulthood; I was developing my adult sense of self, planning what my grown-up life would look like. The news that I would slowly go blind changed everything.
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When Research Offers More Than Just Hope

John and Pam CorneilleI’ve lost a lot of my sight to retinitis pigmentosa, or RP, and as Dr. Edwin Stone is conducting exciting stem cell research focused on the disease, I began the process of scheduling an appointment with him last summer. Dr. Stone’s home base is the University of Iowa, which is just a two-and-a-half-hour drive from my house in Illinois. When an appointment date was finally offered, I found it a little odd that it was for New Year’s Eve, but I was eager to go, so I said yes.
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Patient Registries Help Advance Research for Rare Diseases

Image of Keyboard and StethiscopeRare disease research is challenging, because patient information about the conditions is inherently limited. Patient recruitment for clinical trials can be especially difficult, because so few people are affected.

To address these issues, a number of foundations, patient advocacy groups and governmental institutions have launched online registries to collect patient information for use by researchers, doctors and public health experts.
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Travel Tips for the Visually Impaired

Image of the Colosseum in RomeI’m a lifelong traveler who has retinitis pigmentosa, or RP, and I also run Mind’s Eye Travel, a travel agency for the visually impaired. In fact, I will be exhibiting at the Foundation’s annual conference, VISIONS 2013, this summer. So, if you’re affected by a retinal disease, I’d like to share several useful travel tips. And for those of you not affected, you may find at least a few of them useful as well.
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How an FDA-Approved Retinal Prosthesis Came To Be

Image of the Argus II ImplantThe Argus II Retinal Prosthesis System was recently granted market approval by the U.S. Food and Drug Administration (FDA), which marks a significant milestone in the development of a therapy that has spanned more than 20 years. It was at Johns Hopkins University, in the early 1990s, that I, along with Drs. de Juan, Humayun and Dagnelie, with some early support from FFB, carried out the very first short-term (one hour or so) experiments with human volunteers. We demonstrated that electrical stimulation of the retina could, indeed, produce spots of light perceived by blind patients.

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Exploring a New World

Michael Hingson sits outside with his guide dog.

Escaping a World Trade Center tower on Sept. 11, 2001, certainly wasn’t easy, but sometimes it seems to pale in comparison to influencing the way many view those of us who are blind. I say this because my Ground Zero ordeal — which I’ve shared in my book, Thunder Dog, and will cover in my session at the Foundation’s VISIONS 2013 conference in June — took place in just one day. Whereas changing attitudes has been a lifelong vocation.
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My Race to Cure Blindness

Michael Stone in a bike race Although a disease called cone-rod dystrophy has rendered me legally blind, I’m known, in certain circles, as a world-class triathlete. I swim as well as bike and run (often on mountain trails). I began competing before my vision deteriorated, and I’ve since learned to use my other senses. In fact, I like to think of my feet as my eyes. I take an awful lot of steps, and I don’t land heavily. If I’m on a trail and step on something that doesn’t feel right, I hop off, then move quickly forward. It’s usually on the run where I beat my competition.

But you know what? I can no longer shop for groceries.

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