A Recap of the 2026 Virtual CMD Advocacy Event: Your Voice Matters
From September 12-30, 2026, members of the CMD community participated in this year’s Virtual CMD Advocacy Event: Your Voice Matters, learning how to turn their personal experiences into effective advocacy. Through an advocacy prep session and meetings with congressional offices, participants built confidence, shared their stories, and spoke up about issues affecting people living with CMD.
This year, 16 community members registered for the event, and 8 CMD advocates participated in congressional meetings with 8 offices across 5 states. Each conversation offered an opportunity to help policymakers better understand the realities of living with CMD and the importance of policies that support our community.
Turning Lived Experience Into Advocacy
The event began with a virtual advocacy prep session, covering how to prepare for legislative meetings, connect personal experiences to policy issues, and make specific requests of elected officials. One of the key messages was that you don’t need to be a policy expert to make a difference. Your lived experience is one of the most valuable things you bring to the conversation. As Avery Roberts, Cure CMD’s Community Engagement Coordinator, reminded participants during the session, “You don’t have to be a policy expert to be an effective advocate.”
Advocates were encouraged to focus on the issues that matter most to them and their families, whether that’s Medicaid, access to healthcare and services, federal funding for research, accessible air travel, or disability benefits. By sharing specific examples from their lives, participants helped bring these issues beyond policy papers. Bringing the CMD Community’s Voice to Congress
Throughout the event, advocates met with congressional offices to discuss priorities affecting people living with CMD and their families. Conversations included preserving Medicaid, supporting rare disease research, addressing healthcare access, and improving accessible air travel.
For some participants, this was their first experience meeting with congressional staff. Others built on relationships established through previous advocacy opportunities, demonstrating how continued engagement can keep CMD in the conversation.
After meeting with Senator Jacky Rosen’s office to discuss Nevada healthcare concerns and accessible air travel, first-time advocate Brianna Milton reflected on the experience: “I enjoyed lending my voice and getting to talk about our community!”
Ashley Burkman, who brought her perspective as a parent of a child living with CMD to congressional meetings, emphasized the importance of staying engaged and building lasting relationships with policymakers:
“I want to keep showing up, become a familiar face in this space, and be a resource.”
These experiences highlight an important part of advocacy: the conversation doesn’t end when the meeting does. Follow-up emails, sharing relevant resources, and continued communication help keep the needs of the CMD community on policymakers’ radar. How You Can Get Involved
You don’t have to attend a congressional meeting to make a difference. Advocacy can take many forms, and everyone can participate in a way that works for them.
Here are a few ways to get started:
Contact your elected officials. Take action on issues affecting the rare disease and disability communities through the RARE Foundation Action Center, MDA Action Center, and American Association of People with Disabilities (AAPD) Action Center.
Share your story. Your experiences with healthcare, accessibility, caregiving, and daily life can help policymakers and the public better understand CMD.
Build relationships with congressional offices. You can request meetings with your senators or representatives, follow up on previous conversations, and share resources about issues that matter to you.
Attend an advocacy event. Rare Disease Week on Capitol Hill takes place March 2-4, 2027, bringing together rare disease advocates for learning, community building, and congressional meetings. The travel support application deadline is November 6, 2026, and travel reimbursement is available.
Not sure where to begin? Please don’t hesitate to reach out to advocacy@curecmd.org to learn more about advocacy opportunities, resources, and support for getting involved. Your Voice Matters
Thank you to everyone who participated in this year’s Virtual CMD Advocacy Event and continues to raise their voice for the CMD community. Every story shared, every conversation started, and every relationship built helps ensure that people living with CMD are included in the decisions that affect their lives and futures.
You don’t have to do everything at once. Start with one issue that matters to you, one conversation, or one action. Your voice matters, and together, we can make sure the CMD community is heard.
