by Lisa Van Allen, PhD, Chair for RSDSA’s Advocacy Committee
RSDSA sent out an alert asking you to contact your Congressional representatives to voice your support for increased funding of the NIH for research on rare diseases. During the week of August 11, I had virtual meetings with Senator Chuck Grassley, Senator Jodi Ernst, and Rep. Ashley Hinson. I also sent letters to senators working on the budget committee. Each of the staff members I talked with listened, asked great questions, and expressed their support. This was my second meeting with Sen. Grassley this year and he remembered our conversation during Rare Disease Week in February. This was impressive simply due to the huge number of people he talks to every day as he serves as Senate Pro Tempore, chair of the judiciary committee, and on the budget and finance committees. But he was moved by my story and acknowledged the need for continued research of rare diseases, including CRPS.
It is easy to be awed or intimidated by people serving in Congress, but we must remember two things: 1) they are human with all the strengths and deficits people have, and 2) they chose to accept a position that serves their constituents.
When you contact your representatives, keep this in mind. Appeal to their humanity. They don’t know CRPS pain, but they live with or know someone who lives with chronic pain. Remind them that you are watching their voting records. Mention votes you approve of, or encourage them to reconsider their position on an issue. You will find this blend of appealing to their humanity and respectfully holding them accountable for their actions will have them listening and engaging with your request.
I am very happy to report that I have learned that our advocacy efforts are working. Funding levels for the NIH have been continued with an increase of $400 million dollars for the end of FY2025. I have been assured by the senators and representatives I contacted that they will keep our request for improved funding of rare disease research in mind as they consider the FY2026 budget.
If you have not yet contacted your Congressional representatives, it is not too late! An email, letter or phone call takes very little time, but can make a big difference. We need as many of you participating as possible! Contact forms are available on most Senator and Representative web pages, so first identify your Congressional representatives via Congress.gov and then fill out the contact form on their web page. On the contact form, briefly share what living with CRPS is like, and then ask support for increased funding for rare disease research. When you’re done, you’ll have the joy of knowing you’ve made a difference! Let us know when you hear back from your representative as it will help me as I continue to advocate on behalf of RSDSA.