The Foundation Fighting Blindness (FFB): Special Events & Programs Build a Community for People With Inherited Retinal Diseases

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The Foundation Fighting Blindness (FFB): Special Events & Programs Build a Community for People With Inherited Retinal Diseases

Amber Brooks Amber Brooks • 5/09/17

The Short Version: The Foundation Fighting Blindness provides information, support, and resources for Americans diagnosed with inherited retinal diseases. Altruistic FFB staff and volunteers come together to raise money and awareness on behalf of the visually impaired to let them know they’re not alone. The charitable organization hosts fundraising events, medical conferences, and social galas across the US and funds laboratory research in search of a cure for degenerative retinal diseases. Since 1971, the Foundation has raised over $700 million toward restoring the vision of millions of people. Over the years, the Foundation Fighting Blindness has built a tight-knit community dedicated to developing treatments and, ultimately, finding a cure for inherited retinal diseases. Joining the FFB’s ranks is a great way to contribute to a good cause while meeting people with inspirational stories about overcoming vision impairment.

In college, we were hanging out poolside when one of my friends blurted out, “I think I’m losing my eyesight.” He said he’d noticed a black spot in his vision a week ago. “I thought it’d go away but… it’s getting bigger.”

I was dumbfounded. We were in our early 20s. Things like blindness didn’t happen to us. I had no idea what to say to comfort him, so I just let him talk. He vented for a while about how blindness would change his life. One of his biggest concerns was his love life. He’d never had a long-term relationship and worried he never would if he lost some or all of his sight.

Fortunately, my friend’s fears didn’t come to fruition. A couple weeks later, a doctor told him the black spots were caused by severe migraines. Nothing was wrong with his eyesight.

Those facing degenerative blindness may feel isolated and fearful, like my friend did, but there are plenty of resources offering information, understanding, and hope. Joining a support network of people with the same diagnosis can be a powerful way to work toward emotional and physical recovery.

The Foundation for Fighting Blindness serves as a united front for the more than 10 million Americans who have inherited retinal diseases (IRDs). This charitable organization funds research into potential treatments and also provides resources for men, women, and children dealing with vision loss. The Foundation’s ultimate goal is to find a cure for degenerative retinal diseases.

Screenshot of the FFB's homepage

The FFB is the world’s largest nongovernmental foundation in support of retinal disease research.

A group of families established the nonprofit in 1971 because they felt passionate about helping their loved ones cope with IRDs. They took it upon themselves to take action, primarily by funding research. After decades of hard work and investment, the FFB has made great strides in researching and developing potential treatments including emerging gene, stem-cell, and drug therapies.

Whether you’re interested in resources for the newly diagnosed or personal stories of hope, the FFB provides a strong support system to inform and uplift the blind community.

Additionally, the Foundation has dozens of regional offices that organize inspirational and educational events across the country. You can find a local chapter in your state and join a group committed to raising funds, awareness, and supportive programs for people with Choroidermia, Stargardt Diseases, Macular Degeneration, and other retinal diseases.

“People feel better when they can be part of their own healing,” said Rhea Farberman, Senior Director of Communications and Marketing at the Foundation. “We provide a sense of community so people with inherited retinal diseases get the support and information they need.”

“I’ve been a part of the Orlando Chapter since the early 1990s and have had the opportunity to develop some great friendships within the chapter over the years,” said Dan Day, President of FFB’s Orlando Chapter.

Fundraising & Fellowship at Vision Walks & Dinners in the Dark

The FFB encourages community involvement in events held across the country. VisionWalks, among the most popular events, help the charity raise a substantial amount of money for research on inherited retinal diseases. Altogether, the Foundation has hosted over 19,000 walks in the past 11 years and raised about $43 million at these family-oriented events.

VisionWalks take place in more than 40 cities in the US, and the distances range from 1k to 5k. If you’re looking for a healthy and altruistic way to spend a day, you can join FFB out in the sunshine and walk alongside visually impaired individuals and their loved ones.

Sometimes showing your support for a loved one can be as easy as going to dinner. Dining in the Dark gives people the opportunity to experience what it’s like to be blind for an evening. At these special events, attendees are blindfolded with light-blocking masks and must navigate their meals without being able to see anything. Many find it eye-opening to experience firsthand the challenges faced by the blind community.

Dining in the Dark events raise money and awareness simultaneously — and it’s good fun, too. From wine and cheese tastings to vision symposiums, the Foundation hosts many fundraising events to inform and entertain people.

At FFB events, members of the community come out to support people with vision impairment. Attendees share personal stories, meet inspiring people, and create a strong network meant to help those facing inherited retinal diseases. You can find an FFB event near you here.

“People want to help,” Rhea explained. “Everyone at the events knows someone struggling with loss of vision. Sometimes the diagnosis comes early in life, and it really pulls at your heartstrings.”

Supporting 20+ Ongoing Clinical Trials in Search of a Cure

The FFB leverage community support to fund clinical trials and advance laboratory research on degenerative vision loss. The organization has enabled more than 20 clinical trials and funded more than 100 research grants for potential treatments.

“We’re taking a proactive role in the search for a cure for people with inherited retinal disease,” Rhea said. “Over the past 46 years, we’ve built a body of research and made strategic investments in promising research to find cures.”

Every other year, the FFB rallies together for the highly anticipated VISIONS conference. People from all over the world gather to learn about groundbreaking treatments and other ways to cope with vision loss.

The FFB’s conferences give attendees an opportunity to see what progress is possible. In a Story of Hope, Becky Andrews said her favorite FFB moment came during a VISIONS conference. “I remember attending the dance and seeing Gordon and Lulie Gund out on the dance floor laughing and having so much fun,” she said. “In that moment, I recognized that life would be just fine as I lost my vision.”

“I wanted to meet other people like myself and learn more about resources for people with vision impairments, and that’s how I found the Jacksonville FFB chapter.” — Adriann Keve, FFB Chapter President in Jacksonville

Over the years, the FFB has been instrumental in many advancements in laboratory research, including the identification of more than 250 genes linked to retinal disease. Altogether, they’ve raised $700 million dollars toward developing a cure.

You can join the fight by becoming a Foundation Volunteer or making a donation to the FFB. “Donors make it all happen through their generosity,” Rhea told us. “The progress we make is because of them.”

Staff, Volunteers, Donors & Researchers Share a Common Purpose

The Foundation Fighting Blindness fosters a community atmosphere among staff members, volunteers, donors, and researchers dedicated to the fight against inherited retinal diseases. Based in Columbia, Maryland, the FFB runs a national campaign involving thousands of people.

The FFB staff rise to the challenge of finding a cure for IRDs with enthusiasm and dedication. Many staff members and volunteers join the FFB because they know someone facing an inherited retinal disease. Whether it’s a loved one dealing with visual impairments or they themselves are at risk, it’s a deeply personal cause for all those involved.

The FFB hosts conferences, galas, fundraisers, and other events in a united show of support.

The role of the Foundation is to facilitate action and unite supporters. The organization’s regional offices organize local events to bring new voices to the cause and generate support for vital laboratory research.

“Our goal is to put ourselves out of business,” Rhea said. “We’re very proud of the work we do and happy to be part of an organization that’s making such a positive difference in people’s lives. The work we do is truly life-changing for people.”

FFB: Leading the Way Toward Treatment & Recovery

Thankfully, my friend didn’t lose his vision, but I know it meant a lot to him to have friends who would support him (and act as his seeing-eye wingmen) if he had. When facing a scary diagnosis, such as the prospect of losing your eyesight, it’s a great comfort to know you’re not alone in your struggle. Sometimes that much-needed support comes from a good friend, and sometimes it comes from a charitable organization like the Foundation Fighting Blindness.

Photo of the Foundation Fighting Blindness logo

The FFB’s staff, volunteers, and donors work together to improve the lives of millions of blind people in the US.

The Foundation has spent over 40 years empowering those diagnosed with inherited retinal diseases and developing curative solutions on their behalf. Many impassioned individuals attend FFB events and conferences to learn how to make a meaningful impact in the fight against degenerative eye diseases.

As a whole, the FFB provides a consistent, knowledgeable, and empathetic support system to help people with retinal diseases (and their loved ones) from diagnosis to recovery. Looking toward the future, the inspirational group continues to rigorously pursue the world’s most cutting-edge research in hopes of finding a cure.

“With the progress that’s been made in FFB’s 46-year history, we can now see a time when the diagnosis of an inherited retinal diseases won’t be the end of the conversation,” Rhea said. “The doctor will be able to say ‘Here are the treatments available.’ And we can see that coming in the next few decades.”