What it calls TRAIN, or The Research Acceleration and Innovation Network, serves, in particular, as its “platform for venture philanthropy in medical research.” It’s also the site of a Q&A with Bill Schmidt, FFB’s CEO. In it, Bill shares the Foundation’s history—which shows it to be an early practitioner of venture philanthropy—as well as examples of how we’re currently accelerating retinal-disease research.

Pictured, above: The Foundation’s chief executive officer, Bill Schmidt

Want to know about gene therapy? Our playlist features four videos, one each from four renowned researchers, including Dr. Eric Pierce, chairman of FFB’s Scientific Advisory Board, who does a great job summing up the vital role research plays in finding treatments and cures:

We also offer playlists covering stem cell therapy and gene discovery. And you won’t want to miss the video on why making donations to FFB’s research is so important at this crucial time:

To view all of the Foundation’s playlists, click here.

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.

The treatment, called ECT, for “encapsulated cell technology,” involves the implantation of a protein-releasing capsule the size of a grain of rice into one eye. As part of the trial, however, participants weren’t supposed to know which eye was being treated; so both had to be operated on. This didn’t scare Julie; in fact, although ECT is designed to slow or halt vision loss, “I had hopes it would restore my vision,” she recalls. “No one ever told me that was a possibility, but that’s where my brain went.”

When notified she’d been accepted as a trial participant, the first thing Julie did was cry. “And I’m not a crier,” she says. “But I cried each time I told anyone about it, and I told a lot of people. I was just so happy—these were tears of joy.”

The surgery went well, although she had to wear bandages over both eyes for a few days and wait for the stitches to dissolve, which caused discomfort. Even after they had, her eyes were severely bloodshot—a challenge considering she’d scheduled her daughter’s high school graduation party for just 10 days after surgery. So, Hollywood-diva-style, Julie wore sunglasses throughout the event.

She also noticed something curious. The web page for her 5K VisionWalk team was showing a flurry of donation activity. She discovered, later, that the sedation given to her just prior to surgery had made her extra-talkative. And although she was told only that she’d been “entertaining and funny,” Julie had evidently convinced the entire surgical team to support the walk.

Over the next two years, Julie made roughly 20 visits to U of M, where her eyes were tested, photographed and measured for results—none of which indicated a significant change in vision, either positive or negative. She did, however, experience one side effect. “The protein inside the implant constricted the pupil in me and some other patients, so I knew which eye had the implant,” Julie recalls. “I could feel it—a nagging or pulling—but it wasn’t painful. My acuity got much better in the treated eye. The researchers attributed it to the ‘pinhole’ effect—the pupil is so small, it’s easy to focus with it.”

After the implant was removed, and Julie’s eye returned to normal—which, for her, meant no restoration of vision—she was far from disappointed. The development of ECT, dependent on the trial’s results, is ongoing and may eventually prove fruitful. And that’s what motivated Julie to participate in the first place.

“When I was diagnosed with RP, the fact that there was no treatment or cure wasn’t acceptable to me,” she says. “But I got involved with FFB knowing the research was progressing. And I wanted to help do something about it—by raising funds and, if I had the chance, advancing the science.

“Plus, I wanted to show my own kids and others I come across through the Foundation that when something like RP drops in your lap, you have a choice—you can be a person of action or a victim. It’s up to you. I wanted to show them I’d get in the trenches, do what it takes.

“So if I have the chance to participate in another trial, I’ll jump at it.”

Pictured, above: Julie Anderson.

This social media campaign has helped to spread critical awareness of the Foundation’s work and provide well-deserved recognition to folks who are making a difference on the front lines every day.

After a six-week flurry of nominations, votes, shares, likes and new Foundation Facebook fans, the tallies are in. It is our pleasure to announce the top finishers:

The #1 Foundation Fighting Blindness Front Lines Fan is Carley Colton (pictured above), president of our Houston Chapter, with a whopping 3,154 votes. She’ll receive the grand prize trip for two to the Foundation’s national conference, VISIONS 2013, in June. Currently a 1st grade teacher in Houston, Carley was diagnosed with Stargardt disease in 2004 while a sophomore at Texas A&M University. She’s lost a significant amount of central vision but is hopeful for a cure and determined to help “give blindness the boot,” as she likes to say (showing those Texas roots!)

Second place goes to Mandy Joyce of Ft. Worth, Texas, who also has Stargardt disease.

Our third place finisher is Deanna Boylan of Medford, New York, who is affected by Leber congenital amaurosis (LCA).

Through this campaign, we made great things happen:

If you participated by nominating, voting or sharing the contest with your network, thank you for doing your part on the front lines!

When the campaign ends, on May 10, the top vote-getter will win a trip for two to our VISIONS 2013 conference in Baltimore. As I write this, 32 nominees have received more than 3,200 votes, but we have a couple weeks to go. So if you haven’t yet, please nominate and vote.

Meanwhile, there’s no way we can recognize everyone on the front lines – there are literally millions of them. But we can offer a sampling. Below, you’ll find three people we consider FLFs, along with links to FFB stories covering their work. I urge you to take a look.

	Eric Fulton – One of many in a family affected by retinitis pigmentosa, Eric is a communications manager, a father of two and a proactive supporter of the Foundation. Over three years, his VisionWalk team, Walking Into Walls, raised roughly $15,000. He’s also an active member, in Maryland, of the Montgomery County VisionWalk leadership committee who’s served as event chair and social media and marketing chair.
	Dr. José Sahel – Based at the Institut de la Vision in Paris, France, Dr. Sahel is a Foundation-funded researcher involved in many vision-saving projects. Most recently, he was awarded an FFB grant to develop a gene therapy that would keep cones – retinal cells providing central and daytime vision – alive in people affected by various retinal diseases.
	The Ferreiras – Since their son, J.J., was diagnosed with Leber congenital amaurosis, New Yorkers Jason and Jennifer Ferreira have wasted no time in furthering FFB’s cause—first as VisionWalk participants, then as co-founders of two annual Foundation events. “Pitching for a Cure,” held at Yankees Stadium, has raised $70,000 thus far, and two “Una Vision Para El Futuro” (or “A Vision for the Future”) dinners have garnered $675,000. Jennifer and Jason are now FFB national trustees who encourage all parents of children with retinal diseases to get involved in any way possible.

Just a reminder: If there’s someone you know doing something similar to the folks above, check out our FLF page on Facebook for instructions on how to nominate and vote. Or you can use the button below.