Dispatches from the Hill: First-Timers at NHF Washington Days
Advocacy is a major element of the work that NYCHC does. Every year, we take families and individuals down to Washington DC as part of NHF’s Washington Days Advocacy Event. While there, we speak with legislators about the laws that directly impact the bleeding disorders community. Advocates share their stories with their representatives as family members, patients, and friends of what living with a bleeding disorder is really like. Below, we’ve profiled some first-time advocates who have recently returned from Washington DC to tell you why they speak out for the bleeding disorders community.
The Buccellato Family:
Our first time attending Washington Days were days of hope, bonding and inspiration for our family. The charge of energy we felt and the excitement in our sons’ eyes as we set out towards Capitol Hill will always be memorable. In the crisp, cool morning air and bright, sunny sky, we walked besides our red-tied friends representing their states from across our country. We came to share our personal stories and to express our concerns in these changing times of healthcare with members of Congress. Unified with our bleeding disorder community, we explained how crucial and expensive our treatment is and how vital funding, research and healthcare coverage are. Our sons, still young enough for innocence, yet old enough to really understand, were educated on the importance of advocacy and standing up for causes that effect them so personally. Grateful for this profound experience, we know we’ll return again, solidifying our voices with our red ties on.
As a first-timer to Washington Days, I found the experience interesting and I am excited to see the results that advocacy events can have on our elected officials. Seeing the surprise and concern in the faces of the elected officials and their staff as they heard the personal stories showed me first hand the potential impact of advocacy.
In addition to the advocacy, meeting other families who are dealing with bleeding disorders helped me to see that my family is not alone. I want to thank to the organizers and the families that participated. I especially want to thank the kids and young adults that stood up to be heard by our elected officials!
My first Washington days advocacy event was a wonderful way to use my voice and speak out about the issues that are so very important to my family. My advocacy is inspired by my adorable , happy, fun loving grandson Ross Jacobsen and his mom and dad, Lisa and David.