Advocating Locally with the Foundation

There’s a persistent idea in advocacy that the work happens in Washington, that unless you’ve made the trip to DC and met with your legislators directly, then you haven’t really done it. Having spent a fair amount of time advocating on the Hill, it’s understandable how this idea can take root– after all, most of the real work happens in Washington, right? Not exactly. While each legislator may have an office on the Hill, they have another, far more important office, near you– one who’s whole purpose is to hear your story.

District offices, located within your congressional district (a distance of usually 5-10 miles on average) provide an excellent way to advocate on behalf of the Foundation– building support locally, while we advocate on the Hill.

Angela Parris, a patient who after being diagnosed with GBS, continues to advocate alongside the Foundation, can tell you what this looks like in practice. She came home from our Washington trip in May “inspired to continue advocating for the GBS/CIDP community locally,” and recently sat down with Alexander O’Keefe from Congresswoman Andrea Salinas’s office in Oregon to share, as she put it, her “12-year journey with CIDP.” They talked through the specifics — the HELP Copays Act (H.R. 6423/S. 864), adding GBS to the Defense Department’s Peer Reviewed Medical Research Program, and invited the congresswoman and her staff to the Portland Walk n Roll on August 22 to meet the local community. According to Angela, the staff there were incredibly receptive, “they took detailed notes, and asked excellent questions,” and she left “inspired by the intelligent and dedicated people I have met through this experience.”

Julie Bell, who also attended an in-district meeting with the office of Chip Roy in Texas, also shared a positive experience. For Julie, the ease of scheduling a meeting and getting heard was part of the appeal. “It started by contacting the Foundation to get my local government contacts. I then sent an email requesting a meeting giving available dates and times. Finally, I met with the congressional office.” Although occasionally offices can be more difficult to contact than Julie’s experience, the process is that straightforward. After reviewing our asks, and your story in a 1:1 with a member of your team, we will send you over details for your representative’s office and help you set up a meeting at a time that’s convenient for you. The meeting itself is usually only around fifteen to thirty minutes, and most of it is spent discussing your history, and why these conditions matter to you.

If you’re interested in sharing your story and advocating locally, email Advocacy@gbs-cidp.org, and a representative of the Foundation will guide you through the process.

Advocating Locally with the Foundation

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