When I was 15, I was diagnosed with Usher syndrome, the leading cause of deaf-blindness in the United States. Although I’d had hearing aids since kindergarten, and could never see in dark places, it wasn’t until I started to trip over things in broad daylight that my parents became truly concerned.
Continue Reading…
Archive for the Diseases Category
I’ve been conducting or overseeing scientific research for more than 40 years (yikes!), but I continue to be humbled by its nuances, complexities and ambiguities. Sometimes, just when you think you have something figured out, you find evidence to the contrary. Sometimes, as Vladimir Lenin said, progress is made by taking “one step back, two steps forward.”
Continue Reading…
My ophthalmologist’s voice was firm and direct. “You’re going blind.” Tough words for a 5-year-old to digest.
Years later — despite efforts to cure my retinal disease, first as a graduate student, then as a postdoctoral researcher focused on ocular pathology — I came to accept the truth that those words carried. I was slowly being forced to adapt to a world not designed for me, or for any visually impaired person. But the progressive nature of my disease, retinitis pigmentosa, meant that time was on my side. I had time to change how I do things, how I communicate, how I think.
Continue Reading…
I am very excited about ProgSTAR, the Foundation’s new study monitoring and documenting the progress of vision loss and retinal changes in people with Stargardt disease. On the surface, the study might not sound very exciting, because it isn’t evaluating a potential cure. However, the information gleaned from ProgSTAR will be of enormous value in designing future clinical trials for Stargardt disease treatments.
Continue Reading…
The retina — the sight-enabling tissue lining the backs of our eyes — doesn’t get much visibility in pop culture. (Pun intended.) It rarely gets mentioned on television or in movies. And it’s ironic that the retina is critical to creating and interpreting visual art, yet is rarely explored as an artistic subject.
There is one exception to this phenomenon: Blue Man Group. No strangers to the innovative or avant garde, the multimedia theater troupe produced a lively performance about the retina that was captured on YouTube. I think you’ll find the video (and audio) to be entertaining and informative. Personally, I don’t know how they make it through an entire show wearing blue make-up with the consistency of acrylic paint.
Researchers are developing a number of promising treatment approaches for blinding retinal diseases, which include: correcting genetic defects; replacing lost retinal cells with new ones; and implanting electronic chips, like the recently FDA-approved Argus II. But, sometimes, saving vision simply comes down to keeping retinal cells alive, or at least slowing their degeneration. Known as “neuroprotection,” this approach isn’t just for the retina — it has the potential to preserve and protect all kinds of neural cells, including brain tissue and cells of the central nervous system.
Continue Reading…
“Translational research” is the mantra for many of the retinal scientists funded by the Foundation Fighting Blindness. In a nutshell, the phrase refers to the advancement of vision-saving therapies from laboratories into clinical trials and out to the people who need them.
Continue Reading…
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.
Continue Reading…
The 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.
One of the first lessons I learned in my career was that research study results often raise as many questions as they answer. Such is the case with new results from the gene therapy clinical trial for children and young adults with Leber congenital amaurosis (LCA, RPE65 mutations) at the Universities of Pennsylvania and Florida.
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. 