For more than a year, the NEI has focused significant resources on establishing what it calls an “audacious goal” to fundamentally change the game in vision research and eye care. With so many great breakthroughs occurring in a variety of eye research areas, the NEI recognized it was the ideal time to consolidate energies of the vision science community and present a challenging goal that NEI Director Dr. Paul Sieving said is “big, important and inspiring.” The development of the initiative included review of more than 500 suggested research goals, which were read by more than 80 experts.

I am delighted to report that the NEI’s unveiling of its audacious goal at the annual meeting of the Association for Research in Vision and Ophthalmology is an enormous boost and affirmation for those of us on the front lines of fighting retinal degenerative diseases. The goal, “to regenerate the neurons and neural connections in the eye and visual system,” is exactly what people with retinal diseases need to save and restore their vision. And most of the cutting-edge technologies that will get us to the goal — including gene therapies and stem cells — are exactly what the Foundation Fighting Blindness has taken a leadership role in supporting for the last four decades.

When you look back at the biggest breakthroughs made in retinal research — the identification of the first retinitis pigmentosa gene, the proof that gene therapy can restore vision in humans, and making new photoreceptors from stem cells — most were made by visionary researchers funded by the Foundation. We empowered those scientists to take the bold risks that held the potential to save and restore vision. Many times, those risks led to big advances and dramatically changed the retinal research landscape.

It took audacity for Gordon Gund and the late Ben Berman to establish the Foundation in 1971. But they knew no one would do it for them. Everyone who has joined the Foundation’s family since — researchers, donors and volunteers alike — is audacious in their own way. Whether you are forming a VisionWalk team, organizing a chapter meeting or donating money, you are stepping out of your comfort zone to make a difference. You know the work isn’t always easy, but you also know that no one will do it for you.

We at the Foundation applaud the NEI for its audacious goal and look forward to hearing more about the details to achieve it. The initiative holds great potential for helping people with retinal degenerations. The Foundation stands ready to help the vision community achieve this goal by continuing to drive the cutting-edge research that will deliver the preventions, treatments and cures available to the millions who need it.

In the meantime, don’t forget to be audacious. After all, you are part of the Foundation Fighting Blindness.

Pictured Above: Paul A. Sieving, M.D., Ph.D., Director of the National Eye Institute

Armed with caffeine and an assortment of state-of-the art information processing technologies — I use a remarkable device known as the fountain pen — the science staff of the Foundation Fighting Blindness is learning the latest news from the retinal research front. For us, it is a five-day information-gathering marathon, as we absorb information from hundreds of posters, which describe research project results, attend dozens of presentations and meet with many investigators who we don’t often have a chance to see.

I am pleased to report that 145 posters and presentations at ARVO are for research funded by the Foundation. In my estimation, that represents about 60 percent of all the ARVO posters and presentations on inherited retinal diseases. That’s strong evidence for not only our strong presence at ARVO, but also our leadership role in driving retinal research around the world.

This year’s ARVO theme is “Life-Changing Research.” For the Foundation, that is — and always will be — our mantra. Every research project that we fund, every partnership we establish and every collaboration we facilitate is based on our commitment to advancing life-changing research. In the world of fighting blindness, that means research to save and restore vision in people.

When I walk up to a poster at ARVO to learn about a new misfolded protein that causes retinal degeneration in a mouse model of retinitis pigmentosa, my questions to the researcher are: “How is this advancing our knowledge of disease in humans? Does your finding provide us with clues about how to save vision in people?” We are all about treatments and cures for people, and I am sure we’ll have interesting news from ARVO on human studies as well.

Stay tuned to Eye on the Cure as we report throughout the week on some of our exciting findings from the conference.

And just so you know, I also rely heavily on my Blackberry and laptop during these conferences. I am not a happy camper unless I am well-connected. But there’s still nothing like the feeling of putting ink to paper when I learn something new.

Pictured above: ARVO 2013 attendees discuss some of the research findings on display.

If you don’t know me already, my name is April Lifriu, and I’m the reigning Mrs. World and official spokesperson for FFB. In fact, I recently got into beauty pageants for the sole purpose of raising awareness about retinal diseases, which affect more than 10 million Americans alone, including members of my family, most importantly my two children. Like me, they have retinitis pigmentosa, or RP.

The Foundation has a 41-year history, and it’s raised close to half a billion dollars for the research that will eventually get treatments and cures to those who need it. But this is the first time we’ve established a Save Your Vision Month, which, as its web page shows, gives anyone interested many opportunities to spread the word about retinal diseases and research via the Internet, especially social media.

But there’s another element to it, which is why I recently paid visits to Walmart stores in Forth Worth, Texas, and Indianapolis, Indiana. As supporters of SYVM, Walmart associates have the opportunity to volunteer their time by walking on behalf of blindness research and public education, while promoting healthy vision in their communities.

During the last two weeks of September, I visited five stores in each city to thank those associates and to put a face on the Foundation, so to speak. First, I addressed associates in their store’s break room or Vision Center, and then I greeted customers in the store. Let me tell you, these folks rolled out the red carpet for me, with cake, smiles and friendly greetings. And they listened to my story and what I had to say about FFB and the challenges those with retinal diseases face.

In Fort Worth, one woman told me that she, too, has RP and that, by chance, her daughter had been diagnosed the day before. Through tears, she told me she was so thankful that she’s not alone and that FFB is doing what it can to find a cure.

Similar moments took place during the VisionWalks in both cities. VisionWalk is FFB’s signature 5K fundraiser. I happen to be chairing the one in my hometown of Tampa, Florida, later this month. They not only raise money; they enable those affected and their families and friends to console and support each other. In Forth Worth and Indianapolis I spoke to many mothers whose situations are similar to mine.

This video, shot during my visit to Forth Worth, gives you a sense of what my Walmart and VisionWalk experiences were like:

As I told those Walmart associates attending the Fort Worth VisionWalk, I’d been so exhausted from visiting their stores the day before, I literally fell asleep in my clothes and shoes the night before. But it was a good kind of exhaustion, the kind that comes from a day spent raising awareness and recognizing people also working to further the Foundation’s cause. Now, all of us have an entire month to do that.

Every year, Cantor honors the more than 600 employees it lost in the terrorist attacks by donating all commissions made from trades on September 11 to more than 100 charities—including, this year, the Foundation.

April closes a deal with help from a Cantor trader on Charity Day. Revenues earned from trades on September 11 were donated to various charities, including the Foundation. (Photo courtesy of Getty Images.)

This past year, I was crowned Mrs. World, and before that Mrs. America. Although I’d participated in beauty pageants in my twenties, when I was single, I re-entered the competition as a wife and mother a few years ago with two goals in mind: 1) raise awareness about retinal diseases; and 2) help the Foundation raise funds for research that will treat and, one day, cure them.

I have a mild case of retinitis pigmentosa, or RP, which limits my vision. And my two children—Brandon, 13, and Savannah, 8—are also impacted by the disease. Even with corrective lenses, they have trouble seeing at night, and their peripheral vision is affected. Earning the titles of Mrs. America and Mrs. World helped me become a spokesperson for the Foundation, which is focused on improving the lives of my children and more than 10 million other Americans affected by retinal diseases.

Charity Day—a big success, raising more than $12 million between Cantor Fitzgerald and its affiliate, BGC Partners—was the first of a string of events I’ll attend for the Foundation this fall. In particular, I’m really excited about October, because it’s been set aside by the Foundation as Save Your Vision Month.

All 31 days will be dedicated to uniting and empowering the retinal disease community, largely through social-media activity. For details, you can visit this web page, to find out how to help us educate, engage and inspire people across the nation.

April and Mrs. New York, Leah Bartos, flank actor Steve Buscemi, a fellow celebrity ambassador, at Cantor Fitzgerald.

It’s only fitting that I began the fall season with Charity Day. It was a lot of fun, and the folks at Cantor treated all of us as if we were all A-list celebrities. But as I watched the traders working hard, and donating their earnings to charities, I couldn’t help but think of the Foundation itself. Cantor has taken what was a truly tragic day and turned it into an event that will benefit the less fortunate for decades to come. It reminded me just how resilient and powerful people can be.

The same can be said for the Foundation. In 40 years, it’s raised half a billion dollars for cutting-edge research which, right now, is being tested in clinical trials for treatments around the world. A lot more work has to be done, but a revolution to save and restore vision is truly underway. With my children always in my thoughts, I can’t think of a better cause to get behind.

Pictured, top of page: Mrs. World, April Lufriu, poses with Michael J. Fox at Cantor Fitzgerald on Charity Day. Fox was there representing the Michael J. Fox Foundation. 

Namely, the Chinese have many of the same retinal diseases that affect us, including retinitis pigmentosa (RP), Leber congenital amaurosis (LCA) and macular degeneration. They also have the same interest in finding vision-saving treatments and cures.

What China doesn’t have just yet is the same breadth of knowledge about retinal degenerations as the West. But that is changing quickly, thanks to the growing number of experts like Dr. Sui. Trained by some of the world’s best retinal researchers, including Dr. Ed Stone, of the University of Iowa, and scientists from the National Eye Institute, Dr. Sui is doing an outstanding job diagnosing patients and genetically characterizing their conditions. I was particularly impressed with her caring attitude and great bedside manner.

I was also excited to meet Mr. Zhong Hu, the father of one of her patients, who is interested in starting an FFB-like organization in China. With 400,000 people affected by RP alone, (quadruple the number with RP in the U.S.) and increasing personal wealth, China offers great potential as a resource for driving research to find vision-saving treatments and cures.

It’s research that could benefit people around the world with retinal diseases. I don’t expect to see a Beijing Dining in the Dark fundraiser next year, but there is an enormous opportunity to fund new research.

While China is still at an early stage in retinal science, the country has made major strides in genetic screening and discovery. During my visit, I was joined by Dr. Stephen Daiger, a Foundation-funded genetic researcher from the University of Texas Health Science Center, for a meeting with representatives from the Beijing Genomics Institute (BGI), a group participating in a number of international collaborations.

We were impressed by the sheer power of BGI’s screening technology and saw potential for a future partnership. In fact, the institute was a collaborator for a Foundation-funded project that identified defects in the gene NMNAT1 as a cause of LCA. Dr. John Chiang, director of the Casey Eye Institute Molecular Diagnostic Laboratory in Oregon, co-led that effort and works with BGI on other retina-related genetics projects.

It is important to note that the Chinese clinical research community is also collaborating with the U.S. Food and Drug Administration to bolster its regulatory oversight of human studies. As in many other countries, unregulated medical tourism does exist in China, and, at the moment, you need to be wary of bold claims for sight-saving cures made by companies there.

Overall, my trip to China was productive, and I felt proud to be representing the world’s leader in funding retinal research. At the same time, I recognized that we don’t want to fight the fight alone. It is imperative that we establish and build international collaborations such as those with Chinese institutions, and I am pleased with the steps we’ve taken thus far. By working together, we’re getting to our sight-saving goal much quicker.

In case you didn’t know, the Foundation also funds research in the U.K., France, the Netherlands, Germany and Israel.

Pictured above: Huajin Li and Fei Xu, two of Dr. Sui’s students, standing in front of Peking Union Medical College Hospital. Photograph by Dr. Steve Rose.