2026 Young Adult Leadership Program: Hear from our NF Midwest Attendees!
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.
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.
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.
Advocating as a Parent
Not every advocate lives with NF themselves.
Valencia traveled from Wisconsin to Washington as a mother, speaking on behalf of her six-year-old son Brendan who has a diagnosis of NF1, and families like hers across the country.
Her voice represented caregivers, parents, and children whose stories are still unfolding.
“We are the future. I felt so important while in D.C., not only sharing the story of my son, but advocating for the full NF community.”
Her perspective reminded lawmakers that NF affects whole families, not just individuals.
Every NF Story Is Unique
Amy spoke openly about how different NF affects each person.
Her message was simple and powerful.
“Because of the NF Young Adult Leadership Program, I found my voice and the confidence I needed to place the accommodations I deserve for both my MPH program and my workplace. I didn’t go in asking for permission or making a request; I told them exactly what they were going to do for me to ensure my success. This program empowered me to stop treating my medical needs as a ‘want’ and start stating them as an absolute requirement for my career and education.”
Knowing Voices Were Heard
For Kevin, one of the most meaningful moments was realizing their words made an impact. Seeing lawmakers and staff members listen to his story mattered.
“When we shared our stories on Capitol Hill, our voices were heard.”
That recognition stays with advocates long after the trip ends.
Why This Program Matters
The Young Adult Leadership Program is about more than a single week in Washington.
It builds:
- Confidence
- Leadership skills
- A sense of belonging
- A lifelong connection to advocacy
Because of you, NF Midwest is proud to continue investing in young people year after year. Their voices shape policy, raise awareness, and strengthen the future of the NF community.
Thank you to everyone who supports this program and believes in the power of young leaders!
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