Advocating on Capitol Hill
Over my 20 years, I’ve advocated for Fragile X many times! I’ve met with a lot of Hill staffers (Capitol Hill staff are commonly referred to as “staffers”) over the years by advocating for different Fragile X bills. This year I attended Advocacy Day with my family to have my voice heard by Hill staffers.
Monday Training
We all came together to train on how to advocate by telling your story. We did some role-play to practice telling our story. Remember to keep your stories short and sweet because you have a short time. We also had training from Soapbox Consulting (NFXF long-time partner for Advocacy Day scheduling and logistic support). They told us how to use the app and how to get in touch with them. We all socialized at the reception after.
Tuesday Meetings
On Tuesday, we got up really early- before 6am! — and joined the other Advocates at the Capitol. We toured the House floor and the Rotunda. We took the underground train to our first meetings. Each Advocate had meetings with staff from their Senate and Representative’s offices. I started all the meetings by telling my story to Hill staffers so they remember me. I think the meetings went very well. The staffers were engaging, they listened. They liked our group because we had self-advocates and a research doctor. We left a packet with all the information on the asks (referred to as the Leave Behind). It was a great day, and the weather was perfect!
Follow Up
After I met with the Hill staff, I sent a follow-up email within two weeks of our meeting. I urge all self-advocates and researchers to attend Advocacy Day in Washington, D.C., next year!
—Dillon Kelley, Advocacy Ambassador and Advisor to the NFXF Board of Directors
