Each year, NF Midwest invests in young adults who are ready to speak up for the neurofibromatosis (NF) community. In 2026, five young advocates traveled to Washington, D.C. as part of NF Midwest’s Young Adult Leadership Program. They met with lawmakers, shared personal stories, and helped make sure NF remains a priority.
This program has supported young people for more than HOW MANY YEARS, helping them build confidence, learn advocacy skills, and understand how their voices can create change.
Leadership Looks Different for Everyone

Elise came to Washington with experience. She had participated in the program before, but this year, she stepped into a new role as a mentor. Watching others grow became just as meaningful as speaking herself.
“As a mentor, I felt pride watching this year’s cohort grow and advocate for themselves as they learned the process of going to all the offices on Capitol Hill.”
Leadership, she showed us, is also about lifting others up.
A Week Built on Courage and Growth

For many young adults, advocacy can feel intimidating at first. Meetings are new. The setting is unfamiliar. The responsibility feels big. But confidence grows quickly when stories are shared. Hunter reflected on how the week changed her.
“I felt more courageous as the week went on. I enjoyed sharing my story and making an impact.”
By the end of the trip, her courage had turned into a purpose, which she has brought home with her.
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