By Dillon Kelley

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.

Group playing corn hole in a gym.
Group playing corn hole in a gym.

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

Dillon Kelley (FM) lives in Southern Maryland with his family.  He has joyfully participated in every Advocacy Day and is passionate about the inner workings of the government and public policy. He interned for the Committee on House Administration under Congressman Gregg Harper as well as for Rep. Steny Hoyer and the Capitol Visitor’s Center.

Dillon works at the Real Food Studio as the bar manager. He enjoys spending time with family and friends.  He loves watching NFL and college football (Go Saints!)

Missy Zolecki, Director, Community Empowerment

Missy Zolecki
Missy joined NFXF team in 2018 after being an active volunteer since 2010. Missy organized several fundraisers and educational workshops while serving in her volunteer role. Missy is the mother of three children. Her eldest son, Matt, lives with Fragile X syndrome. Prior to joining the NFXF team, Missy had worked as a nurse for more than 20 years. She enjoys traveling and spending time with family and friends.

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