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Archive for the Retinitis pigmentosa Category

Despite Blindness, the Peaches are Sweet in Paran

Ignacio, a farmer with RP, tends to his peach orchard in Peru.Paran, a village of 300 people tucked in the foothills of the Andes near Lima, Peru, is known for its sweet peaches, but also its high rate of blindness. About one in eight Paranos have lost their vision.

Until recently, the villagers never understood the cause of the affliction, though they suspected there might be a genetic component because it runs in families. However, most had never even received care from a doctor.
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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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ARVO 2014: European Collaboration Developing Cross-Cutting, Vision-Saving Therapies

The DRUGSFORD collaborativeOne of the most intriguing reports on therapy development at the annual meeting of the Association for Research in Vision and Ophthalmology came from a European collaborative project called DRUGSFORD, which is derived from the phrase “drugs for retinal degeneration.” With funding from the European Union, the project brings together three research groups and two companies to develop a therapy that can treat a disease pathway common to many retinal degenerations. Simply put, they’re creating therapies that can save vision in as many people as possible, independent of the genetic cause of disease.
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ARVO 2014: Three Promising CEP290 Gene Therapy Alternatives

Renee Ryalls explains the dual-AAV gene therapy she's developing.While gene therapies for retinal degenerative diseases are making groundbreaking strides in both human and laboratory studies, the most widely and successfully used human-engineered virus for delivering replacement genes to retinal cells — the adeno-associated virus, or AAV — has one significant limitation. It can’t deliver relatively large genes, namely those larger than about 4.5 or 5 kilobases (kb). (Bases are the building blocks of a gene, and its size is expressed in kilobases.)
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ARVO 2014: Breaking the 50-Percent Barrier in Successful Genetic Screenings

While it makes perfect sense to get excited about the progress being made in developing sight-saving treatments and cures, we shouldn’t lose sight (no pun intended) of the importance of successfully diagnosing patients. Though some therapies under development will work independent of patients’ defective genes, knowing their mutation(s) opens the door to a precise diagnosis, a more accurate prognosis and a much better understanding of which emerging therapies might save or restore vision down the road. Participation in clinical, or human, trials often requires a genetic diagnosis as well.
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UCI Stem Cell Pioneer Poised to Launch Clinical Trial for RP Patients

Dr. Henry Klassen, a Foundation-funded researcherHenry Klassen, M.D., Ph.D., is only about a year from launching a clinical trial for a stem cell treatment to rescue vision in people with retinitis pigmentosa (RP) and, potentially, other retinal diseases. At the Foundation’s recent Orange County Innovation Symposium, the University of California (UC), Irvine clinician-researcher reported that he and his colleagues are in the midst of final lab studies with patient-grade cells. Once finished, they’ll request authorization from the U.S. Food and Drug Administration to begin their human study.
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Hitting the Accelerator: A Man with RP Competes in the 2014 Paralympic Games

Mark Bathum makes a downhill run with his guide.Mark Bathum was in his late teens when he realized skiing wasn’t going to be a career option. Although he was enrolled in a ski school, where he’d proven himself a top junior racer a couple years prior, he was making so many mistakes on his runs, he didn’t have a chance of placing. And he didn’t know why. “Come race day,” he recalls, “I was getting lost on the course a lot.”
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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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An FFB Board Member’s Perspective on Her Experience with Acupuncture

Moira Shea, an FFB board member who says she has benefited from acupuncture therapy, at home with her guide dog, Finnegan.A few weeks ago, the Foundation’s chief research officer, Dr. Steve Rose, authored a post about acupuncture that generated significant interest from readers at Eye on the Cure and on FFB’s Facebook page. The impetus for his post was a feasibility study at Johns Hopkins University, in which Dr. Ava Bittner, O.D., Ph.D., found that eight of 12 people treated with acupuncture had, as Dr. Bittner reported, “significant vision improvements in night vision, dark adaptation and/or visual field.”
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The Challenge

A Series on How People Affected by Retinal Diseases Adjust to Continual Vision Loss

John Corneille – Out of the Closet

John Corneille and his wife, Pam, get ready to hit the road on their tandem bike.Seven years ago, John Corneille’s world was crumbling. “I almost hit rock bottom,” the 54-year-old recalls. He’d recently left his law firm, his marriage was in jeopardy, and he could no longer hide that he had retinitis pigmentosa. “It was bad enough where I had to check myself into a school for the blind, in Chicago. I stayed there, from January to May.”
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