Swinging for a Cure: One Advocate's Mission to Make PNH Visible
If you ask anyone who knows Brianne, she’s the person who always shows up for those in her community. As a high school teacher at an alternative school, supporting others has become second nature to her. But her commitment to giving back reaches far beyond the classroom.
In 2025, Brianne was recognized with the Aplastic Anemia and MDS (AAMDS) International Foundation’s Leadership in Philanthropy Award—an honor that reflects more than a decade of dedication for raising awareness and funds for paroxysmal nocturnal hemoglobinuria (PNH), the rare disease she lives with. For the past 11 years, she’s organized a community golf outing that’s collectively raised more than $110,000 toward PNH research.
The Journey to Advocacy
After nearly 5 years figuring out how to navigate life with PNH, Brianne decided it was time to dip her toes into rare disease advocacy by sharing her story at various luncheons. Bringing awareness to PNH has become something she’s extremely passionate about, and she believes one of the best ways to teach people is through your own story.
“[PNH] is invisible – people get surprised that something might be wrong.”
Wanting to make a greater impact, Brianne decided to marry two things she loves – golf and advocacy. Having played since she was 4 and worked at a golf course for fifteen years, she saw an opportunity to bring people together in a meaningful way. Her annual golf outings host over 200 people each year, bringing in local businesses who rally behind the cause and donate goods for auction. Every dollar of the $110,000 raised over the last 11 years goes towards research.
Looking Ahead with Hope
Today, nearly two decades after her diagnosis, Brianne is living largely symptom-free thanks to research and finding an effective treatment. Her journey has shown her that no two experiences with PNH are the same. The one message she continues to share with others navigating life with a rare condition is this: be your own strongest advocate.
For Brianne, advocacy includes showing up to medical appointments informed and prepared. She remembers how her father once kept a three-ring binder filled with her medical information. Today, Brianne uses Folia to maintain her own health record all from her phone.
Looking forward, Brianne finds hope in the progress being made for people living with PNH. More treatment options, growing research, and increased awareness are changing what’s possible. And that progress is fueled by people like her—patients, advocates, and community members—who continue to show up, speak out, and make a difference.
