"The Tenacity of Hope" Docu-Film's Director, Levi Gershkowitz,
and his fellow panelists during the Rare Reels panel discussion.
February 24-26, 2025, fearless CMD Advocates took part in Rare Disease Week on Capitol Hill 2025, hosted by the Rare Disease Legislative Advocates (a program of the EveryLife Foundation for Rare Diseases).
The multi-day event kicked off with the Rare Reels Screening and Reception that featured Cure CMD’s docu-film, in partnership with Living in the Light, The Tenacity of Hope. This unique event celebrated impactful stories from the rare disease community. Cure CMD is honored our film was selected, and thank you to the film’s director, Levi Gershkowitz, for providing insight during the event’s panel on showcasing what it means to live with CMD.
The week continued with the full-day Legislative Conference, which was filled with networking and learning about the current and future landscapes of rare disease public policy. Advocates were briefed on the legislative process, legislation currently under consideration by Congress, and effective advocacy techniques to build relationships with Members of Congress and staff. Retired NFL legends and first-time advocates, Josh Andrews and Art Still, both of whom live with rare diseases themselves, joined advocates in DC.
Finally, the most anticipated part of the week, Hill Day, had arrived. With a new administration at the helm, the U.S. federal policy environment is rapidly evolving and sharing our stories is important now, more than ever. Advocates geared up to attend meetings with their Members of Congress and their staff to share their stories and present the proposed legislation that impacts the rare disease community. They urged Members of Congress to support the rare disease community by:
The remainder of Rare Disease Week included a Pride in Rare Meetup, Young Adult Rare Representatives (YARR) Meetup, the Rare Disease Congressional Caucus Briefing, and this year’s Rare Artist Reception. The FDA-NIH Rare Disease Day 2025 will be rescheduled to occur in the coming months.
The current and rapidly evolving U.S. federal policy environment has raised a number of questions from our community about the impact on those living with CMD. In response, Lani Knutson, Cure CMD’s Advocacy Team Lead, released the following statement as the Cure CMD Advocacy Team, along with our advocacy partners, continue to actively monitor developments and provide pertinent updates.
As the EveryLife Foundation instills in us, this time of year around Rare Disease Week and Rare Disease Day our community is reminded that we are: Together. United. Strong. Powerful. Keep an eye out for more opportunities to advocate in the coming days and consider attending next year’s Rare Disease Week on Capitol Hill. Your voice truly matters!
Identify your Members of Congress and send them an email sharing your story and the challenges the CMD Community faces.
Use action alert platforms to easily contact your legislators about NIH funding, Medicaid, and other issues important to our CMD Community.
Read up on Texas v. Becerra and take action to help defend Section 504, which protects people living with disabilities.
Rare Across America is the opportunity to meet with your Members of Congress virtually and at their in-district offices and educate them on the issues that are most important to the rare community by sharing your story. Mark your calendar for May 12, 2025 when registration opens.
Participate with the Cure CMD Advocacy Team, whether at a large or small capacity, by joining the Cure CMD Advocacy Advisory Council and/or sharing your voice on social media using the hashtags #ShowYourStripes and #CareAboutRare. Interested in getting involved? Email Lani Knutson at advocacy@curecmd.org.