“When I was 8 years old, it was my second grade teacher who first started to notice that something was wrong,” says Heather Edwards, President of the South Carolina Chapter of the Foundation Fighting Blindness (“FFB” or “Foundation”). “I was holding books really close to my face, and the fluorescent lighting made it especially difficult for me to see in the classroom setting.”
Heather was soon diagnosed with Cone Dystrophy, a visual impairment affecting the cones of the eye, impairing color vision, light vision, and central vision. “It leaves me legally blind,” Heather elaborates. Her affiliation with the FFB traces back to her childhood, where she grappled with the realities of disability, often with minimal support, igniting her commitment to advocate for those facing similar challenges. At just eight years old, Heather began a myriad of clinical testing in search of a diagnosis for her visual impairment. “We ended up going to my local eye doctor, Dr. Royal. She suggested that we go to the Storm Eye Institute in Charleston,” she recalls. “They ran a day’s worth of tests on me. They injected dye into my veins with various needles. It was so scary and so traumatizing,” Heather remembers, emphasizing her vulnerability as a child being thrust into the reality of her diagnosis.
The outcome of Heather’s evaluation was Cone Dystrophy. “I remember thinking ‘what is happening to me right now?’ It was so much to process at such a young age. Being in second grade and having to try to deal with what this diagnosis means for the rest of your life was terrifying,” she recalls.
After her diagnosis, Heather’s world was turned upside down as her family, doctors, and school administration began preparing her for a lifelong journey of adaptation. “At these appointments, they would tell me, ‘you should probably start training with a white cane, learn braille, look into a guide dog, start preparing for the future, because these conditions often become degenerative,’” she says. “I couldn’t even grasp what that meant at the time. I just wanted to be on the playground and be a normal kid.”
Preparing for the Future
Though overwhelmed by her diagnosis, Heather embarked on a journey to acquire life skills through alternative means, hoping that these newfound abilities would grant her independence in adulthood. “This is when I met Clair Turbeville, a teacher for the visually impaired in the Horry County School District. She was an angel sent from Heaven and my greatest advocate. She was always looking for new tools that could help me,” Heather said. Heather’s introduction to Clair provided her with a true example of what an advocate looks like, connecting her to an orientation and mobility specialist who could help her develop the skills necessary for independent and safe travel. “I would get taken out of class to start doing training. We would go onto Main Street in North Myrtle Beach, South Carolina. I would close my eyes and start to learn how to listen for traffic,” Heather said. Clair’s advocacy for Heather not only provided her with support, but also instilled a newfound sense of confidence during an exceptionally challenging transitional period. “It can be so depressing in high school,” Heather explains. “You see all your friends getting ready to go to college and getting their driver’s licenses. They’re getting their freedom and their independence, and I was still getting dropped off by my parents. It was such a gut punch to not be able to participate in that. I was realizing that I was never going to get that same independence.” Reflecting on her journey, Heather yearns for the support and community offered by organizations like the Foundation Fighting Blindness during her diagnosis, recognizing that such resources could have provided her with hope and reassurance that her life would be just as meaningful as it was prior to her diagnosis of Cone Dystrophy.
Heather enrolled at Coastal Carolina University with the goal of earning a Bachelor’s degree in psychology, aspiring to become a licensed therapist. Upon graduating, a different job opportunity presented itself. “I wanted to be a therapist, but right after college I was hired at a bookkeeping position at an apartment complex. I stayed there for three years and found myself loving the financial aspect of the job,” she recalls. “I went back and got my accounting degree at Horry-Georgetown Technical College. Soon after, I was approached by First Baptist Church of Conway, who was looking for a new finance director. I worked there for about 2 years and had an awesome experience.”
Heather spent the next few years of her professional life navigating through workplace challenges such as finding reliable transportation to work, having to use magnifiers to see company documents, and harsh lighting in offices that irritated her vision, before finally being introduced to workplace accommodations. After leaving her role at the church, she began working at the Myrtle Beach Area Chamber of Commerce in the accounting department. “I found a great community there. I was fortunate enough to be able to attend night school to receive my Masters of Business Administration from Coastal Carolina University at that time,” she says. When the pandemic hit in 2020, Heather began remote work for the Chamber. “I found that remote work better suited my needs, because I was able to control my environment and didn’t have to worry about transportation to and from work. I stay involved in the Chamber by keeping in contact with my coworkers, remaining a member of Grand Strand Young Professionals, and attending Chamber networking events to raise awareness about the Foundation,” she explains.
Since leaving the Chamber, Heather has found a place to call home in a remote position with her current company, Community Solutions International. “I was always ‘Heather with the visual impairment,’ or ‘Heather with the disability.’ Now I’m just Heather from Finance,” she laughs, thrilled to be a part of a company that both accommodates and encourages her. With a glimmer of normalcy arising in her professional life, Heather began reflecting on all of her challenges since her diagnosis, and started searching for an opportunity where she herself could become an advocate for others.
Becoming an Advocate
“I was approached in December of 2022 to be a part of the leadership team in South Carolina for the Foundation Fighting Blindness.” Her excitement was immeasurable, knowing that she would finally be able to be that pillar of support for those in need in her community. “I just love the foundation’s mission,” says Heather. “The mission is not ‘let’s wallow in sorrow because we all have this disability,’ but instead, ‘let’s fund research so we can find a cure, while at the same time supporting those who have retinal diseases so that we can encourage them throughout their journey.’”
The Foundation Fighting Blindness operates at both national and state levels, with the chapters serving as the local branches or subdivisions. Within each state chapter is a leadership team consisting of six different roles, including Heather’s current role as President. “The chapters are all about engagement,” Heather explains. “Giving resources, making connections, and organizing events and speakers for those struggling in the community is what we do.” One of Heather’s main goals as chapter president is to give people hope and show them that they are still capable of achieving their dreams, even with a visual impairment. “I never had these people to look up to. When I was diagnosed, I always wondered, ‘What do people like me do in life?’” Heather hopes to eliminate this question for others by organizing events within the chapter where the community can connect, receive information about potential clinical trials, and share knowledge about the resources that work for them.
“One facet to the Foundation is a program called ‘My Retina Tracker,’ a digital program that provides free genetic testing and community connection for those with visual impairments. When you get genetically tested, you can upload your results to a tracker to be connected to clinical trials that relate to your condition. You can go on a map on the tracker and see how many people in the United States, your county, and even your city, share your same disability. It creates this sense of not being alone,” she explains, highlighting the importance of community. To Heather, community means everything. Having other visually impaired people to share resources and communicate with is essential to empowerment and a sense of belonging. “My former teacher, Clair, connected me with a young girl who was just diagnosed. Her mom was having a hard time dealing with it, and we invited them to our vision seminar. They stayed for 3 hours to chat with speakers and myself, and we were able to provide them with some great resources. I think it soothed them, and gave them some hope,” she highlights. “She was really touched that we invited her. Now she’s a member of the South Carolina Chapter, which was such a cool experience.”
A Vision for the Future
After struggling with mental and physical health issues throughout her life and finding medicine through food, health, and yoga, Heather has found stability and peace. This past year, Heather, through her tireless efforts, has received her 200 hour yoga teacher certification, and hopes to combine her love for health and yoga with her desire to support and uplift the visually impaired community by teaching various classes and workshops through the Foundation.
Heather’s passion for helping others also extends her support to several other local nonprofits, including the New Directions of Myrtle Beach, whose mission is to help people recover from the crises of homelessness, poverty, and addiction by providing basic needs, connections to resources, and community. She is particularly proud of her participation in the ‘Over the Edge’ fundraiser, where she rappelled down a 17-story building to help raise funds to support the New Directions’ efforts to help people recover from homelessness. Heather is looking forward to several future fundraising events within the FFB as well, including a Macular Degeneration seminar that will take place in Columbia, SC, in February 2024. Heather is hopeful that the South Carolina chapter of the Foundation will be selected for a ‘Vision Walk’ in the near future, and is currently focusing on fundraising efforts through a candle collaboration with Lucid Coast Candle Bar of Myrtle Beach, which has created a special candle for the FFB, donating fifty percent of all proceeds back to the Foundation. While reminiscing on her philanthropic journey, Heather notes one specific theme that has always drawn her to philanthropy, “You never know when you’re going to need someone’s help. Why not help other people now, because you never know when you might need that same help reciprocated to you in the future.”
To support the South Carolina Chapter of the Foundation Fighting Blindness, please visit fightingblindness.org/chapters/south-carolina-chapter