Early in my optic atrophy (and, at first, glaucoma) journey, I made the decision to use my diagnosis as an opportunity to advocate on behalf of the millions of patients who have not yet found their voice. In short order, this led me to the Glaucoma Research Foundation (GRF) website, a treasure trove of information for patients, care partners, and clinicians.
Over the years, I have engaged with GRF as a member of the Patient Summit Steering Committee, reviewer of patient-facing material, and frequent flyer on webinars. I feel strongly about the importance of patient advocacy. I am excited to share a discussion I recently had with Nancy Graydon, Executive Director of Development and Chief Operating Officer at GRF. We discussed the interplay between patients, nonprofits, and clinicians.
Richie Kahn, MPH: What role do nonprofit organizations play in glaucoma care and patient advocacy?
Nancy Graydon: We believe that nonprofit organizations play an essential role by partnering with clinicians to provide reliable educational information to inform and empower individuals with glaucoma as well as their families. We see GRF as an important ally of both glaucoma specialists and patients. Now more than ever, doctors are pressed for time as many patients are returning to the clinic and many offices are understaffed. GRF’s clinician-reviewed educational resources can help to fill that gap and answer questions between visits.
Richie Kahn: What educational resources are available?
Nancy Graydon: Our booklet Understanding and Living With Glaucoma (available online and in print), is an exceptional tool for patients and caregivers. It contains comprehensive information and detailed explanations yet is easy to understand.
We recently updated the guide with new illustrations and diagrams, and it was reviewed for medical accuracy by leading glaucoma specialists in coordination with the Preferred Practice Patterns recommended by the American Academy of Ophthalmology (AAO). The new edition has been expanded to 40 pages and includes space for patients to write down their questions and prepare for upcoming appointments. By reading the booklet, patients can gain knowledge about their disease and feel empowered to make informed choices about their glaucoma care.
Providing reliable and unbiased patient education and support is an important part of GRF’s mission. When patients are first diagnosed with glaucoma, they often turn to the internet to learn more about the disease, the latest treatment options, and promising research on the horizon. The diagnosis can be overwhelming, and typically the primary question from patients is, “Will I go blind?”
Thankfully, the search for information about glaucoma often leads to our website, which has more than 3 million visits per year. With an abundance of easy-to-digest articles and videos by leading glaucoma specialists, patients can read, watch, and download a wide range of informative materials to learn more about scientific advances and updates in glaucoma care. That is exactly how we connected with you, Richie!
Richie Kahn: Does GRF offer any additional resources?
Nancy Graydon: Yes! In addition to our website, we offer a free glaucoma newsletter, Gleams, which is mailed three times a year to more than 83,000 homes and doctors’ offices in the United States and Canada. An additional 36,000 subscribers receive the newsletter by email each month. Many doctors, including more than 75 members of GRF’s Ambassadors program, encourage patients to subscribe to Gleams to learn more about glaucoma. They find the newsletter to be an effective way to improve patient compliance.
Andrew Iwach, MD, Director of the Glaucoma Center of San Francisco and Board Chairman of GRF, encourages all of his patients to sign up for the Gleams newsletter. “After every new patient comes to the clinic, we help them sign up for Gleams so that they will have an ongoing resource and reminder to take their glaucoma seriously,” he said. “It is an important and effective step for me to take as their doctor.”
GRF has also made a concerted effort to provide Spanish language materials, both in print and online. To date, we have held two Spanish patient webinars, and we recently added Spanish captions to the Glaucoma Patient Summit video library.
Of course, many doctors refer patients to us when they ask, “How close is a cure?” For more than 4 decades, GRF has invested in the most innovative areas of research. Our collaborative research team, known as the Catalyst for a Cure, is currently focused on vision restoration. We are incredibly fortunate to have four exceptional investigators exploring the most promising leads, including optic nerve regeneration, stem cell replacement, and gene-based therapies. The team’s efforts represent our best hope for rapid progress toward a cure. Their work is incredibly inspiring for patients.
Richie Kahn: The third annual Glaucoma Patient Summit was held in June, 2021. Why did GRF start this event?
Nancy Graydon: We felt that there was a real need for additional patient support and that an annual meeting such as the Glaucoma Patient Summit would provide a unique opportunity for patients and caregivers to meet and learn from each other as well as from doctors and researchers developing and prescribing the latest treatment options. We introduced the first Glaucoma Patient Summit in 2019, and two additional summits have been held virtually due to COVID-19. We plan to hold the next in-person Glaucoma Patient Summit in Oak Brook, Illinois, on June 25, 2022.
Richie Kahn: Obviously, I’m a little biased in my passion for patient advocacy. From your perspective, why is it important?
Nancy Graydon: Although our innovative research programs provide incredible hope to patients when it comes to future treatments and a cure, our educational endeavors help both patients and doctors now. Giving back through volunteering and philanthropic support is an important part of the process for patients as it provides both empowerment and purpose at a time when so many things may feel uncertain for those living with glaucoma. Richie, your connection with us was established as part of your fact-finding and advocacy. Beyond the need to learn more about your own diagnosis, you wanted to get involved and help others. We couldn’t do the work we do without that level of engagement from both patients and doctors. Thank you! We will be forever grateful.
Richie Kahn: It has been an absolute pleasure working with the GRF team, Nancy, and I look forward to future collaboration. I started my career in the advocacy space and am thrilled for the opportunity to get back into it with such a tremendous partner and champion.
Posted on February 16, 2022
Richie Kahn, MPH
Richie Kahn, MPH is a health policy professional, clinical researcher, patient advisor, and a glaucoma patient. He volunteers for Glaucoma Research Foundation on the Patient Summit Steering Committee.