“More Like a Disco Ball”
Beacon Stories
Since becoming involved with the Foundation Fighting Blindness 10 years ago, Brenda has become a dedicated leader, advocate and champion for the community. Whether welcoming someone newly diagnosed, leading the Fort Wayne Chapter or participating in a clinical trial to help advance research, Brenda has dedicated herself to creating more hope and opportunity for others.
Brenda is recognized on stage during the Fort Wayne VisionWalk, holding a bouquet of flowers alongside fellow participants and event leaders.
For the past decade, Brenda Niccum has been a familiar face within the Foundation Fighting Blindness community. As president of the Fort Wayne Chapter, a dedicated VisionWalk leader and passionate advocate, she's spent years bringing people together, sharing hope, and encouraging others to become involved in the mission.
But if you ask Brenda about her leadership, she's quick to shift the focus away from herself.
"I'm not a spotlight," says Brenda. "I'm more like a disco ball. I want to reflect everybody else's light back so that it just goes everywhere."
Whether she's welcoming someone newly diagnosed, sharing the latest research news, or volunteering countless hours to strengthen her local Foundation community, Brenda’s greatest joy comes from helping others shine.
Long before becoming a leader, Brenda spent 30 years working in childcare, caring for infants and young children throughout her hometown of Fort Wayne, Indiana.
"I've changed half of Fort Wayne's diapers," jokes Brenda.
Although she never had children of her own, she poured her heart into caring for generations of families. At the same time, however, Brenda was quietly carrying challenges of her own. Living with retinitis pigmentosa (RP) and navigating a decades-long abusive relationship left her questioning what the future might hold.
Because RP had affected several generations of her family, including her father and great-grandfather, Brenda knew inherited retinal disease was part of her family's story. Still, she never expected it to become part of hers. As a child, she assumed her astigmatism and glasses explained why she struggled to see after dark. It wasn't until her 30s, when she was driving at night and hit a curb hard enough to flatten her tire, that she received an official diagnosis.
Like many people facing a new diagnosis, she left the appointment with more questions than answers.
"There was grief and fear," recalls Brenda. "I didn't really know how to move forward."
That began to change when Brenda attended a Foundation Fighting Blindness chapter meeting with her parents about 10 years ago. She expected to learn more about RP. Instead, she found something she hadn't realized she was missing—a community of people who truly understood.
When she was invited to join the Fort Wayne Chapter leadership team shortly afterward, Brenda hesitated.
"I remember thinking, I've never done anything like that before. I don't know if I'm qualified," says Brenda. "Then I thought, 'Wait a minute. I think I want to try this.'"
Looking back, she describes that decision as a turning point.
"My life just pivoted from that point on," says Brenda. "My confidence grew, I stepped out of my box a lot more, and really got connected with a community of people who shared lived experiences. It gave me a sense of excitement and purpose."
As her confidence grew, so did her willingness to step outside her comfort zone, not only within the Foundation, but in every aspect of her life.
Brenda and Troy pose for a selfie while standing on a wooded trail, with trees and a dirt path in the background.
The encouragement she found through the Foundation helped Brenda find her voice in ways she never imagined. A self-described shy person who once dreaded public speaking, she soon found herself standing on the VisionWalk stage each year, sharing poems she had written about hope, community, and the progress being made toward treatments and cures.
"I kind of found myself," says Brenda. "Something that had always brought me fear became energizing."
The confidence she gained through the Foundation also gave her the strength to make deeply personal changes. Eventually, Brenda left the abusive relationship she had been in for 30 years and rebuilt her life. Along the way, she found a new source of love and joy in Troy, the love of her life, whose presence gave her a sense of hope she never expected to experience.
Today, she describes that chapter not as the end of her story, but as the beginning of one she never imagined was possible.
"You don't see it at the time, but once you get through it, you realize there were lessons in it," says Brenda. “I fully attribute my involvement with the Foundation to the confidence it gave me to step out. I learned how to stand up for myself, and now I can help other people do the same.”
That desire to help others has shaped every opportunity that followed.
Today, Brenda works at The League for the Blind and Disabled in Fort Wayne, where she connects people with disabilities to the resources they need to live independently. Recently promoted to development and communications manager, she now has an even greater opportunity to educate, advocate, and share information with the community she serves, making an even bigger impact.
It's work that feels like a natural extension of everything the Foundation inspired.
"I send a lot of people to the Foundation Fighting Blindness," says Brenda. "I encourage them to get involved."
Her passion for helping others extends beyond community leadership and into research as well.
When Brenda first became involved with the Foundation a decade ago, research looked very different. She remembers learning about early stem cell studies and hearing conversations about technologies that still felt years away.
"I thought I was helping raise funds for future generations," says Brenda. "I didn't think it would impact my own life. But watching research advance over the past decade has been nothing short of remarkable.”
After learning more about genetic testing and emerging clinical trials through the Foundation and conversations with her retinal specialist, Brenda decided to volunteer for a Phase 3 study. Participating meant traveling across the country for appointments over the course of a year, navigating unfamiliar airports and stepping well outside her comfort zone, committing countless hours to advancing research.
When she learned she had been assigned to the control group, she admits she was disappointed, but only for a moment.
"I got over myself and realized this was going to further the science for others," says Brenda.
She remained fully committed, knowing that every appointment, every test, and every mile traveled contributed to advancing research that could one day benefit the entire inherited retinal disease community.
Brenda joins Fort Wayne VisionWalk participants at the ribbon-cutting, holding a blue ribbon with other leadership, beneath a covered pavilion.
That selfless perspective is something Brenda carries into every aspect of her life. Whenever she learns about a promising research update or new clinical trial, she's eager to share it with others, hoping someone else may benefit.
"I don't want it just for me," says Brenda. "I want it for everybody."
After years of welcoming families into the Foundation, mentoring others through vision loss, and connecting people to resources through The League for the Blind and Disabled, Brenda has become exactly the person she once needed herself.
So when someone is newly diagnosed, her advice comes from experience.
"Ask questions, seek out the resources through the Foundation Fighting Blindness, and get connected," says Brenda. "Sometimes it's intimidating, but nobody knows your experience better than you. You have to be your own best advocate."
Brenda may insist she's "more like a disco ball" than a spotlight, but perhaps that's exactly what makes her such an extraordinary leader. For the past decade, she has reflected hope onto everyone around her, through the Fort Wayne Chapter, VisionWalk, research participation, and her work serving the disability community. In doing so, she's shown that sometimes the brightest light isn't the one shining on itself, it's the one helping others find their own.
