Coming up with a treatment or cure for any disease is hard enough, clinically speaking. But when you factor in the bureaucratic and financial obstacles involved, it can be downright daunting. FasterCures, a self-described “action tank,” is trying to accelerate the treatment-development process by bringing together researchers, businesspeople and foundations to share ideas and resources.
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Rich Shea
As the Foundation Fighting Blindness’ senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. Previously, he was a journalist for more than 20 years, covering everything from education to entertainment to public health. As an Eye on the Cure blogger, he writes posts about Foundation members, events and researchers as well as coping and lifestyle issues.
Every field of research has its “rock stars,” specialists so revered for their knowledge, expertise and experience, they’re famous in certain circles worldwide. And when it comes to retinal-disease research, the stars are invariably linked to the Foundation Fighting Blindness, which either funds or has funded their vision-saving work. So, after interviewing a handful of them recently, we’ve put together a few research-oriented playlists on our revamped YouTube page.
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Julie Anderson admits she’s stubborn. “It’s the German in me,” she says. “I don’t ever give in.” So when she was diagnosed with retinitis pigmentosa, or RP, a hereditary disease that progressively diminishes eyesight, the mother of three didn’t crawl into a hole. She joined FFB and, for more than a dozen years, has been its Minneapolis chapter’s president. And when she heard, in the mid 2000s, that the company Neurotech would be conducting a Foundation-funded clinical, or human, trial for a treatment of RP at the University of Minnesota, she was literally the first in line to be screened for approval. Continue Reading…
If you are a regular reader of this blog and other Foundation communications, you’re sure to have heard about the search for our #1 Front Lines Fan (FLF). We received dozens of compelling nominations from across the country, highlighting people who are taking action in the fight against blindness.
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Three weeks ago, FFB kicked off its Front Lines Fan (FLF) campaign, in part to celebrate those who are on the front lines of fighting blindness. They include researchers, chapter leaders, those walking and racing for a cure, fundraisers, parents and, of course, people affected by retinal diseases. We also wanted to provide an opportunity for those who help us any way they can to be recognized. You can enter our FLF contest by either nominating yourself or someone you consider a deserving FLF.
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Here in the Communications department at FFB’s HQ, we do all we can to help our science and fundraising teams do their jobs. And in Foundation offices nationwide, our staff does all it can to help those on the front lines – those either affected by a retinal disease or supporting someone who is – do all they can to raise awareness and funds.
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The timing couldn’t be better. This Friday, March 1, the U.S. Congress, by not voting on ways to decrease the federal deficit, will allow automatic, across-the-board budget cuts to go into effect instead. Known as “sequestration,” Congress’ inaction will harm retinal research spending, in particular, by gutting the National Eye Institute of the equivalent of 90 grants aimed at restoring or saving vision.
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When it comes to restoring vision in people with retinal diseases, history isn’t made overnight. Treatments and technological advances have to, first, be tested in labs, and then in clinical, or human, trials. And how quickly they move through the process depends on how readily they’re funded, to the tune of tens of millions of dollars. So, making a treatment or device available to the general public takes years, if not decades. Which is why we, at FFB, are so excited about last week’s announcement that the U.S. Food and Drug Administration has granted market approval of the Argus II retinal prosthesis.
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This week is cause for celebration at the Foundation Fighting Blindness, because it was exactly a year ago, today, that we launched Eye on the Cure. In the debut post, Dr. Steve Rose, our chief research officer, wrote that, with any research project FFB considers funding, he asks himself, “Is the juice worth the squeeze?” In other words, is the project worth the time and resources necessary to get it up and running? He posited that Eye on the Cure was well worth the squeeze because it was an “opportunity to share not only our expertise, but the expertise of those in the field we consider invaluable.”
Two days ago, as part of FFB’s “Light the Way to a Cure” fundraising campaign, I shared the story of Corey Haas, as an example of clinical trial participants benefitting from gene therapy studies the Foundation supports. In his case, the therapy’s for a retinal disease called Leber congenital amaurosis. Today, I’d like to share the story of Dick Coulson (pictured, left), who has age-related macular degeneration (AMD), the leading cause of blindness in people age 55 and older. It’s also the target of two treatments that are currently in clinical, or human, trials, both of which are derived from stem cells.
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Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. 
As the Foundation's senior science writer, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. 