Stepping Into Advocacy
Stepping Into Advocacy
Written by Joannah Roush
Posted: November 1, 2025. This article was originally shared in our Summer 2025 Newsletter.
Over the past few years, we chose not to attend Washington Days, partly out of fear of not knowing what to say when we were in the meetings with lawmakers, and partly because I didn’t know if my son was ready. But last year, after seeing photos of his friends in the community who attended and hearing their stories, both he and I started to gain a better understanding of what the experience was really like.
This year, we decided it was time to take the leap into advocacy, and we applied to attend to represent Vermont. I’ll admit, I was nervous about bringing my three boys, all under the age of 12, to Capitol Hill on my own, but NEHA and NBDF did an incredible job preparing us.
When we arrived in Washington, DC, NBDF hosted a training to make sure we knew about the issues we were advocating for, and they gave us tools to help us share our story and communicate clearly. They also paired us, as first-time attendees, with seasoned advocates who made the process much more approachable.
During our time in Washington, we met with the offices of Senator Bernie Sanders, Senator Peter Welch, and Representative Becca Balint. After sharing our story about living the hemophilia, we asked them to support the following policies that would protect our community and others with rare diseases:
- Support the HELP Copays Act (S. 864), a bill that would ban copay accumulator adjusters on all insurance plans across the
country. - Protect and fund federal health programs that support Hemophilia Treatment Centers (HTCs).
- Reject proposed cuts to health care.
This experience was both eye-opening and deeply educational for our entire family. I gained a greater appreciation for the legislative side of advocacy, and for my son, Ian, it was a powerful opportunity to reflect on life with hemophilia and learn how to share his story in a meaningful way. As a mom, hearing him speak with confidence, show photos, and explain his experiences was absolutely unforgettable.
One of the most memorable moments was getting a personal tour of the Capitol from one of Senator Peter Welch’s interns. The boys still talk about riding the underground train that allows Senators and their staff to move easily between the office buildings, walking through the tunnels, and climbing the iconic steps of the Capitol Building that are used during Presidential Inaugurations.
Overall, this was truly a 10 out of 10 experience—and we’d jump at the chance to go again!
Every year, NEHA provides travel scholarships to help members of our community attend NBDF’s Washington Days event. In 2025, advocates from 49 states, including all six in New England, participated in more than 250 meetings with their elected officials and staff members on Capitol Hill. Learn more about Washington Days here.
Joannah and her sons live in North Chittenden, VT. Her son, Ian, has hemophilia.