How can you get closer to the quest for a cure for glaucoma? Join the Glaucoma Research Foundation team as a volunteer! There are so many meaningful and rewarding ways to get involved — from staging a fundraiser to contributing your creative talents at at Foundation event; from speaking up at a Patient Summit to serving as a volunteer leader. Explore these stories for real-world examples of people inspired to become active advocates for a future free of glaucoma.
“My main goal is to let people know about glaucoma.”
Igor Leal walked into his optometrist’s office for a contact lens check. He walked out with a glaucoma diagnosis. The doctor said he’d never seen eye pressure so high.
Worried about the future of his vision, Igor searched for answers and discovered Glaucoma Research Foundation. “I found so much information there,” he says, “and I was really impressed with their research.” Connecting with GRF provided the push Igor needed to take charge of glaucoma and preserve his vision.
Although he has lost some visual field, Igor is incredibly grateful that he can drive, work, and — most important — write and perform his music. Inspired to raise awareness and advance the quest for a cure, Igor volunteered his talents as a singer-songwriter, putting on several benefit shows for Glaucoma Research Foundation and performing at the GRF Gala Afterparty in 2020.
“I feel Glaucoma Research Foundation has all the tools to find a cure and restore vision,” Igor says. “They just need the funding.”
“I had a little time on my hands. Why not volunteer someplace where I could make an impact?”
When Trinh Green was diagnosed with glaucoma at 21, she was no stranger to vision challenges. As a child, she battled a rare eye disease. Then, when she was a teenager, Trinh’s eye pressures shot up, and she was diagnosed with glaucoma. Multiple surgeries followed. But diligent self-care and an exceptional doctor managed to preserve Trinh’s vision. She went on to attend Harvard University, eventually becoming a family physician.
Trinh’s personal experience taught her that glaucoma, though serious, need not rule one’s life, and she was determined to help others find hope, too. She turned her considerable energies toward Glaucoma Research Foundation’s mission — serving first as a volunteer office administrator, then becoming a GRF Patient Advocate. In 2022, Trinh spoke out about healthcare disparities and unmet needs at the 2022 Virtual Congressional Briefing during World Glaucoma Week.
“When I first learned I had glaucoma and was told I could be blind by age 50, I was very, very scared. There were so many things I still needed to do in life,” says Trinh. “Today, knowing that genetics are a factor in glaucoma, I’m concerned for my children. I would love for there to be a cure, so I never have to wonder about their futures.”
“It’s so important to get the word out there that this is an organization that’s going to have a long-term impact for a huge population.”
Andrea Epstein was drawn to Glaucoma Research Foundation because someone she loves lives with glaucoma. Her husband, David Epstein has experienced vision problems his whole life and was diagnosed with glaucoma in his 20s while at Harvard Business School.
Andrea was there for David’s diagnosis and has witnessed the toll glaucoma takes on him every day. She also has what she calls a “science brain.” The combination of sent Andrea on a quest for treatments for David and connected her with Glaucoma Research Foundation. In YEAR, she attended GRF’s Glaucoma 360 event for the first time. “I was in awe,” she recalls. “The physicians and researchers there were focused not just on status-quo treatments, but on solving the challenge of people going blind from this disease.”
Inspired to get more involved, Andrea helped launch the GRF Patient Summit in 2019. Drawing on her past experience as executive director of Global Genes, a large organization focused on rare diseases, she continues to guide the annual summit as volunteer chair of its steering committee.
“Supporting GRF keeps us connected to what’s going on.”
When Tess Wilmoth turned 7, she didn’t want presents. Instead, she asked for checks for Glaucoma Research Foundation. “I hope the money we present to you helps find a cure,” Tess wrote in the letter that accompanied her donation.
Living with someone who has glaucoma changed Tess’s life, and that of her sister, Cate. Their brother, Christopher, was diagnosed at 7 months old, and as he grew, his sisters came to understand that, someday, glaucoma could steal his sight. Determined to make a difference for kids and grownups with glaucoma, Tess and Cate began saving money from lemonade stands and birthday parties to support GRF’s quest for a cure.
Now young adults, Tess, Cate, and Christopher continue to co-host GRF events at their family home and to volunteer in many ways. Their father, Charlie Wilmoth, has long served on the Glaucoma Research Foundation Board and as treasurer, and was honored at GRF’s 2020 Gala with the President’s Award. “When our family started supporting GRF, the cure was a distant goal. Today, we are moving toward vision restoration,” says Charlie. “When I look at how far we’ve come, I’m optimistic that there will be a breakthrough during Christopher’s lifetime.”
“I’ll do anything I can to spread awareness and help those who can’t get the care they need.”
One in every 10,000 babies in the United States is born with glaucoma. Diagnosed at three months old, Amanda Eddy is among them. Two eye surgeries early on and vigilant use of drops stabilized Amanda’s vision. But her father was not as fortunate. Diagnosed late, he lost vision as a young child.
These experiences kindled Amanda’s passion for educating families about the importance of regular eye exams for children — a mission she carries out by supporting Glaucoma Research Foundation. Around 2011, Amanda launched a small online business selling her unique and delicate handmade jewelry. In 2017, during National Glaucoma Awareness month, she gave a percentage of the proceeds from the sales of one of her favorite necklaces to support GRF programs. She chose the perfect piece: a golden eye pendant.
In recent years, Amanda’s vision grew less stable, requiring two back-to-back surgeries. The experience reminded her of the important of regular vision checkups and reinforced her commitment as a GRF volunteer — serving on the Patient Summit Steering Committee, speaking at the Patient Summit, Glaucoma 360 Gala, and other events. “I genuinely think that a cure will be found in my lifetime,” says Amanda. “Glaucoma Research Foundation is making it happen.”
“Art is not only helping me. It’s helping other people heal, too.”
An award-winning kitchen and bath designer in the Baltimore area, Pat Caulfield loved making beautiful spaces. But after 20 years, she had to walk away from it all as glaucoma stole much of her vision.
Unable to work and drive, grieving all she had lost, Pat knew she needed more than medical help. That’s when she discovered Glaucoma Research Foundation and its Patient Summits, which helps people cope with glaucoma and vision loss. As Pat took charge of her vision, she retaught herself to paint in a new, more abstract style, entered juried shows, and started selling her work. When a Baltimore cancer center bought one of her pieces, Pat knew she had to keep going.
In 2022, Pat organized GRF’s first-ever art show for its Glaucoma 360 event. Pieces by artists with glaucoma, including some of Pat’s own work, were auctioned to benefit GRF research and education programs. Pat sees her volunteer effort as planting the seeds of a cure for the next generation. “As people with glaucoma, we need to have hope, but we also need to know how to advocate for our own healthcare,” says Pat. “GRF helps us do that.”
“GRF is a great place to get educated and connect with other parents.”
Born with glaucoma during the Covid pandemic, baby Demi underwent three micro-surgeries during her few months of life. Demi’s scared and shocked parents, Chris and Heather Lea, worried for their tiny daughter — too young to understand that she couldn’t touch her eyes during recovery, with her future vision at risk.
In such distressing circumstances, some parents might have retreated from the world. Instead, Chris and Heather decided to help other parents of children with glaucoma. As Demi’s eye health improved, they set out to raise money for research and awareness. A medical professional, Heather educated herself about congenital glaucoma and discovered Glaucoma Research Foundation. Then the Leas posted Demi’s story on Facebook, asking for donations to GRF, hoping to raise a small amount. In the end, they raised $10,000. “That’s when we realized we could make a real difference,” says Chris.
“We were surprised by how many people reached out to us with their stories,” says Heather. As Demi grows, she and Chris plan to keep spreading the word about congenital glaucoma and supporting GRF. “The more educated we got, the less scary it became,” Heather says. “We want parents to be more aware and get their kids tested.”
“I want to give while I can.”
Tracy Hammond was born in 1976 with congenital glaucoma. Know what he does today, Tracy realizes: Had he been born 10 to 20 years earlier, he might not have any vision. Thanks to daily medications and scores of surgeries and procedures, Tracy has some sight as an adult. And he remains optimistic because he knows that scientists funded by Glaucoma Research Foundation are pioneering even better treatments and a cure.
A a lobbyist in Washington, D.C., Tracy credits medications that keep his glaucoma controlled with helping him build a rewarding career and inspiring him to invest in the next generation of care. He did his due diligence before making his first gift to Glaucoma Research Foundation and, as his capacity for philanthropy grew, has joined the Catalyst Circle. In 2022, Tracy volunteered as a panelist for a GRF webinar, sharing his personal perspective and his hopes for the future.
“As long as I’m able to keep hold of my vision and have a productive, rewarding career, I want to contribute,” he says. “A cure would be great, but even if we find a new eye drop or a laser procedure or a pill that could extend my vision or someone else’s, it’s important.”
“I am a glaucoma patient advocate by necessity.”
A self-described “glaucomaniac,” Richie Kahn is a health policy professional by training, a clinical researcher by trade, a clinical trial participant by choice, and a patient advocate by necessity. Richie was working on the development of ophthalmic devices when he learned that he had glaucoma-related optic nerve atrophy — a discovery that changed his path forward.
Richie’s first action after his diagnosis was to dive into treatment options. Learning through his own research and experiences, he began to translate his findings so that others could benefit and, in the process, transformed himself into a patient advocate and educator. Richie found a far-reaching forum for his outreach through Glaucoma Research Foundation. Since 2019, he has served on GRF’s Patient Summit Steering Committee, been a panelist in patient webinars, and moderated online programs like Clinical Trials 101 — everything a patient needs to know to participate in and benefit from clinical research.
Richie also guest-authored a piece on the GRF blog about Selective Laser Trabeculopasty (SLT), an FDA-approved, first-line surgical treatment. As a well-informed patient who has experienced the procedure himself, Richie addressed common questions and concerns in a straight-forward, personal way. By sharing his passion for preserving vision, Richie hopes to empower other patients to protect their own sight.
“Delta Gamma encourages collegiate and alumnae members to support groups that share its mission.”
Every day, the Glaucoma Research Foundation connects countless people — patients, their family members, physicians — with information and encouragement in their quests to understand, live with, and overcome glaucoma. Meanwhile, Gleams — GRF’s popular newsletter — brings hope and new knowledge to countless readers around the globe.
Both are possible because Linda Linck — active fundraiser, Chair of GRF’s Development Committee, and board member since 2009 — engages organizations like the Delta Gamma Foundation in GRF’s quest for a cure.
Delta Gamma is a women’s fraternity based in Columbus, Ohio. Focused on Service for Sight and Aid to the Blind, its foundation is one of the nation’s leading advocates for vision preservation. Grants have helped underwrite the GRF website and Gleams for many years, and members have volunteered at events and collaborated in fundraising efforts. Having held a number of Delta Gamma national offices, Linda is a natural liaison with GRF and has encouraged local Delta Gamma chapters in Diablo Valley, Palo Alto, Berkeley, and San Francisco to contribute volunteer time and funds to GRF. “We have loved supporting GRF’s mission to cure glaucoma and restore vision through innovative research,” she says.
“There is no question. We are moving closer to the goal line — a cure for glaucoma.”
Physicians who volunteer their time and expertise are essential to the Glaucoma Research Foundation mission. One inspiring example is Bob Stamper, MD, Distinguished Professor of Clinical Ophthalmology and Director Emeritus of the Glaucoma Service at University of California, San Francisco.
A vision-care pioneer since the 1960s, Bob was on the scene when GRF co-founder Bob Shaffer was building the team that would advance the organization’s objectives. “I hung around and eventually was appointed to the board,” Bob humbly says of his service since 1987. In 2019, he was honored with GRF’s 2019 Visionary Award for his longtime dedication and many contributions in the glaucoma field.
Today, Bob is a member of GRF’s Gleams Editorial Board, Executive Committee, and Research Committee — groups that give him a hand in patient empowerment, the direction of GRF, and progress toward a cure. Through his role on the Research Committee, Bob helps identify promising areas of investigation. Inspiration for the current Catalyst for a Cure consortium, targeting vision restoration, grew from Bob’s work with glaucoma patients who, over the long term, can lose vision. “We don’t want anyone to slip through the cracks,” Bob says. “Vision restoration will be critical to our ability to manage glaucoma for everyone.”
“Finding a cure is a challenge, but it’s not an impossibility.”
Born with congenital cataracts, diagnosed with glaucoma at just a few months of age, losing vision to a detached retina at 10 years old — Hannah Eckstein has always known vision challenges. A lifetime of caring for her own eyes, from daily drops to surgeries, has made Hannah a particularly compelling ambassador with an important message: Glaucoma is not just an older person’s disease.
Today, while aiming for a career as a veterinary technician, Hannah shares that message as a partner in Glaucoma Research Foundation’s quest for a cure, because she wants to save others from the challenges she has experienced. It started with a small personal donation and the recognition that she, too, could make a difference. Then, a popular local pizza place agreed to contribute a portion of the bill to GRF when customers brought in a special fundraising flyer. Over time, Hannah’s commitment deepened, until she became an ambassador in a more formal way, volunteering to speak at the GRF Patient Summit in 2019.
“I’ve gotten so much happiness from my involvement with GRF,” says Hannah. “A cure needs to be discovered so people can lead their lives and not worry constantly what will happen to their vision, or their children’s vision.”
(The printed edition of the Gleams newsletter is only available if you live in the United States or Canada)