With the elections now behind us, the U.S. Congress needs to address an issue that could delay by years, perhaps even decades, the ability of those with serious diseases to access treatments that will at the very least change their lives for the better, if not save them. The looming “fiscal cliff” – Congress’ current means of tackling a substantial budget deficit – is a combination of tax increases and spending cuts that will kick in January 1, 2013, if no further legislative action is taken. And it’s a huge mistake.
Continue Reading…
Archive for the Usher syndrome Category
It’s a mystery that has confounded scientists for many years: Why don’t mice with Usher syndrome type 1 — one of three types of combined blindness and deafness in humans — lose vision? It is an important question, because mouse models help us understand how vision is lost and how effective treatments might be. But if the mouse isn’t losing vision, how can we tell if a potential vision-saving therapy is working?
Continue Reading…
Rachel Weeks, who has Usher syndrome – a disease affecting both vision and hearing – is a dedicated triathlete. With guidance from her sister, Rebecca, she runs, swims and bikes her way through triathlons with only a 10-degree field of vision and 30 percent of her hearing. But once, as she prepared to plunge into the water with hundreds of competitors, a woman insisted on congratulating her for her efforts. At that particular moment, it served as a disorienting reminder of the challenges she faces.
Three weeks ago, in recounting my participation in Charity Day at Cantor Fitzgerald, I mentioned that FFB had established October as Save Your Vision Month (SYVM). Well, now it’s here, so I wanted to reiterate what SYVM is all about and how the Foundation has been preparing for it the past couple of weeks.
Continue Reading…
Video Included:
You wouldn’t think that the ability to sort black, white and grey socks would be a big deal for a successful attorney, but when that lawyer is completely blind from retinitis pigmentosa (RP), and used a “bionic retina” to accomplish the simple task, well, that is a big deal.
Continue Reading…
Without a doubt, as chief research officer at FFB, I get more questions about clinical trials – also known as human studies – than any other topic. So, I thought it would be useful to provide a list of the major clinical trials underway right now for retinal disease treatments. Continue Reading…
Ryan Lochte, I didn’t get a chance to meet. I did, however, get a picture taken with Michael J. Fox, who was very cordial but focused most of his attention—and rightly so—on a little girl with muscular dystrophy. Now, actor Steve Buscemi is a character and a half. I was there with Leah Bartos, who’s Mrs. New York, and because I’m Mrs. World, and the two of us were wearing crowns and sashes, he took a look at us and, before a photo was snapped, said, “Wow, let me get in between these two ladies.”
Continue Reading…
I was very heartened to hear about and then see a recent news story on the first patient to be treated in the Usher syndrome 1B gene therapy clinical trial at Casey Eye Institute, Oregon Health & Science University. When I saw the big smile on the face of Michelle Kopf, the young woman featured in the article, it brought a smile to my face.
Continue Reading…
A couple weeks ago, I was in China, to visit with Dr. Ruifang Sui, a Foundation-funded clinician-researcher at the Peking Union Medical College Hospital in Beijing. During my time there, I felt like I had never left the United States. Don’t get me wrong — there’s no mistaking Beijing for Baltimore (the location of our national office) or Mandarin for English. But when it comes to retinal degenerations, we and the Chinese have a lot in common.
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. 
As the Foundation's senior writer, Rich writes and edits content for all of the Foundation’s print and online publications, including its blog, Eye on the Cure. 
Nobel Prize Winners Have Big Impact on Emerging Retinal Treatments
By Dr. Steve Rose on October 15, 2012 | 0 Comments
Video Included:
For science geeks like me, the announcement of Nobel Prize for Medicine winners is always exciting news. But this year’s two recipients are especially near and dear to my heart, because their groundbreaking work is having an enormous impact on sight-saving retinal research.
Continue Reading…