Listen to this page using ReadSpeaker

How Evolution is Leading to Gene Therapies for More Retinal Diseases

Dr. John FlanneryAt first blush, gene therapy for retinal diseases seems so simple: Inject a tiny drop of liquid containing good copies of a gene to replace the bad, and you’re home free. Vision is saved, and, in some cases, it’s even restored.

But the reality is: Developing gene therapies that are safe, effective and long-lasting is very challenging in our world of genetically diverse retinal degenerations. Scientists have to design a delivery system that gets the genes to the right types of cells across the entire retina, but without affecting other cells.
Continue Reading…

Erik Weihenmayer’s Next Big Challenge

Erik WeihenmayerA longtime friend of the Foundation Fighting Blindness, Erik Weihenmayer is best-known as the blind guy who reached the top of Mount Everest. The first and only. But that was back in 2001. Since then, the 45-year-old, who lost his vision to retinoschisis in his teens, has embarked on a series of adventures—among them, scaling the Seven Summits, mountain-bike racing and starring in the reality show Expedition Impossible. He’s also written books and traveled the world as a motivational speaker. In fact, he spoke at FFB’s annual VISIONS conference in Minneapolis in 2012.
Continue Reading…

Let’s Get Behind This Senate Bill

The Capitol Building, Washington, DCKudos to Sen. Tom Harkin (D-Iowa), who, yesterday, introduced the Accelerate Biomedical Research Act in Congress. It’s a bill that seeks to restore absolutely necessary funding to the National Institutes of Health (NIH) that has been cut to the bone because of Congress’ years-long impasse on federal-budget spending. But as Sen. Harkin, chairman of the Senate’s Appropriations Subcommittee on Labor, Health and Human Services and Education, notes in his website post, “biomedical research should not be a partisan issue.”
Continue Reading…

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.
Continue Reading…

Brother Virginia — a Big Sound and a Big Heart

Brother Virginia's new EP benefits FFBIf you haven’t already heard of them, you probably will soon. Brother Virginia, a Nashville-based duo mixing pop, country and rock, has been on the road, crisscrossing the United States and amassing a grass-roots following, over the past couple of years. Steve and Eric have also released a new EP, Southern Summer, the proceeds from which are benefitting their favorite cause, the Foundation Fighting Blindness, through July 31.
Continue Reading…

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.
Continue Reading…

VISIONS 2014 — Clinical Trials Need Pioneers

Drs. Shannon Boye and Jacque DuncanWith about 20 clinical trials underway for retinal degenerative diseases, and many more ready to launch soon, the buzz about signing up for them has never been louder. When it comes to human studies for potential treatments and cures, everybody wants in.
Continue Reading…

VISIONS 2014 – The Multi-Talented Dr. Shannon Boye

Shannon BoyeShannon Boye, Ph.D., is something of a rock star here at the VISIONS 2014 conference. Serving as a panelist in sessions on gene therapy and clinical trials, the University of Florida assistant professor has won compliments for her skill in explaining complicated research in plain English. And her compassion for those affected by retinal diseases is plain to see.
Continue Reading…

VISIONS 2014 — My Retina Tracker: Track Your Vision and Drive the Research

Rusty BromleyOne of the big challenges with rare retinal diseases is, well, they’re rare. That makes it hard for researchers to find disease-causing genetic mutations and understand why the defects result in vision loss. It also makes it tough to figure out why a disease can progress at such different rates, even for people within the same family. Perhaps what’s most difficult is identifying enough participants for clinical trials for potential therapies.
Continue Reading…

VISIONS 2014 – The First 24 Hours

Registration boothIf you’ve been to one of our annual VISIONS conferences, you know the Foundation takes pride in the mix of opportunities we offer attendees, everything from research updates to field trips. Rather than prattle on about how the current conference—which kicked off in Broomfield, Colorado, yesterday—is going, I thought I’d share photos and captions from VISIONS 2014’s first 24 hours. So, here goes:
Continue Reading…