S2E6: Dawn Prall – The Good Fight for Sight

Host: Hilary Stunda

In this episode, Hilary Stunda speaks with Dawn Prall, the creator of MyMacDLife Podcast and the founder of The SupportSight Foundation. The majority of Dawn’s work has been in the health care and social services industries. In the last decade, she has become a champion of low vision patient education, raising awareness to fund MacD research. In this episode, she shares her story.

Dawn Prall began working in the field of macular degeneration twelve years ago when she received an unexpected job offer from the founder of the Macular Vision Research Foundation, now known as The SupportSight Foundation. Initially, she knew little about macular degeneration; however, in the first year, she immersed fully in the role. Dawn says she had the benefit and privilege to learn from, and “geek out with” scientists and researchers at the foundation.

Hilary asks Dawn about the inspiration for the structure of The SupportSight Foundation.

Dawn traces her inspiration back to her first year, “geeking out” with the scientists and learning what an impact finding new treatments would have for millions of people. The SupportSight Foundation’s national footprint allowed Dawn to travel around the country and meet with patients, and the families of patients who had lost their vision because of macular degeneration.

As a disease specific charity, The SupportSight Foundation is solely focused on MacD. The work they do advances potential breakthroughs in medicine.

Dawn explains the importance of the work she does for bettering people’s everyday lives. While doctors do well to take care of a patient’s eye health, TSSF and MMDL fill the gap of information that addresses things like going to work, family life, reading, and the normalcy of everyday hobbies. She acknowledges, when people lose their sight because of macular degeneration doing the things they love can be a challenge.

MacD is not as widely discussed as something like diabetes, for example, despite it being a major disease impacting so many people. Dawn explains that it’s about public health and the public’s awareness. The public is beginning to know more now than they did before because research on MacD has progressed in the past 40 years. It was important for scientist to first understand the cellular makeup of macular degeneration before they could diagnose people.

Next, Dawn explains MacD is a retina disease with two types, known as “Wet” and “Dry”. There are treatments currently available for “wet” MacD, called anti-VEGF injections. “Dry” macular degeneration is an area where more funding for research is needed because there are currently no treatment other than vitamins. She emphasizes, the foundation’s aim is to help people learn about how to cope with MacD, and help people understand the research. All donations to The SupportSight Foundation goes towards the search for a cure.

Following up on the topic of research and funding, Dawn shares how TSSF funds research projects by top scientists all over the world. She says, “Research is iterative, research makes medicine” and is not separated.

Next, Dawn dives deeper into the science behind MacD. Because MacD is a retina disease, scientists and researchers explore how the retina functions within the macula of the eye to understand what causes the macular degeneration. Dawn goes on to explain, the disease gets its name from the process with which the cells in the macula of retina die, hence the name macular degeneration. Current research being done involves cellular regeneration.

The macula is in the retina. The retina connects to the optic nerve and the optic nerve to the brain. And the retina’s job is basically a camera. “So, you don't really see with your eyes you see with your brain.” Dawn acknowledges, for people listening, whether or not they understand that part, what matters to them is there is no cure; what matters to them is what to do in the meantime, which is what TSSF and MyMacDLife do.

When asked if research for MacD has evolved over the years, Dawn responds saying, “Of course, the research is not static. A scientist’s job is discovery. Their job is understanding how that retina works and why those cells are dying. The researchers and scientists need financial support to do that”. At The SupportSight Foundation, her staff and team of researchers, lead the way. Overall, TSSF has been successful in raising close to $30 million to fuel research and public education so everybody knows the disease.

Hilary asks Dawn about her hope for a cure. Dawn expresses emphatically, she is not only hopeful, but optimistic. It's just a matter of time, or else I wouldn’t be doing the work she does. She admits, she would love to work herself out of a job, because that means they have accomplished their goal. And at this moment, she adds, they are a lot closer than they’ve ever been. “Every time somebody discovers something, that moves that needle.”

Dawn connects her passion for this cause to her values. In her upbringing, as a “sales brat” Dawn was accustomed to moving around often. Always the new girl in school, she learned the importance of building relationships and being approachable. That helps to create funding. She cites her Midwestern values as intrinsic and entrenched in who she is.

“You have to believe in something and stand for something and my family values were more about making sure that there is a passion, there is something meaningful in your life. And then you just build your life around that.”

Dawn expresses what an honor and a privilege it is to make a difference in people's lives. MyMacDLife Podcast has given The SupportSight Foundation a microphone, to bring people together, tell their stories, and create a community. It enables the foundation to do more in a powerful way.

Hilary agrees, saying she finds the MMDL podcast gets rid of despair. She says, with the abundance of resources available, “patients can hope, at the end of the day, they're not as lost as they think they might be." Dawn says the podcast aligns with the personality and value of the foundation: intimate, relationships-centric, and warm-big.

Dawn emphasizes that patient advocacy is key to her work. The power of advocacy comes from knowledge of the disease and sharing the experiences people go through losing their vision. First, sharing with their friends, family, and caregivers. Then, sharing it with the rest of the world.

Dawn acknowledges, “This world is not set up for low vision.” She reflects on making brownies, the directions were printed was brown on brown. Initially, advocacy focused on awareness of MacD. Now, it's expanded to advocate for everyday accessibility on computers and assistive technology. There's a force behind advocacy when MyMacDLife gets everybody who's listening and everybody who's affected by it to join together.

Dawn invites listeners to learn more at mymacdlife.org, donate to The SupportSight Foundation, share their story, and help build community.

In the last segment, Dawn speaks with Mike Wood from Vispero. Mike shares information about the RUBY Family products by Freedom Scientific, a line of Assistive Technology. The RUBYs are a series of portable video magnifiers that come in multiple sizes that use a camera lens to enlarge and sharpen the image of any page of text. For example, when checking a price tag, or reading a menu. To learn more about the RUBY Family, go online to www.vispero.com or call their toll-free number, 1-800-444-4443. Mike lets listeners know you can go to freedomscientific.com to listen to an online webinar about how to use your Ruby video magnifiers.

Dawn ends the episode emphasizing that MyMacDLife is a resource above all, dedicated to supporting patient education.

Recommended Resources

- http://www.supportsight.org/

- http://www.mymacdlife.org/

- https://www.vispero.com/

- https://www.freedomscientific.com/

- https://www.freedomscientific.com/products/lowvision/rubyproductfamily/

- https://www.enhancedvision.com/

- https://us.optelec.com/

- https://www.healthyvisionassociation.com/

- https://www.novartis.com/

- https://www.hinklestein.com/

- https://www.maculardegeneration.net/

- https://www.mymacularjournal.com/

- https://www.facebook.com/groups/mymacularjournal/

- https://www.health-union.com/