Your voice matters to the Huntington’s disease community

For years before her 2018 diagnosis with Huntington’s disease (HD), my wife, Jill, worked with children at a school. One of her fondest memories is of seeing shy children find their voice thanks to a teacher’s encouragement.

“All they needed,” she said, “was for someone to say to them, ‘Your voice matters.’”

The HD community is, in many ways, a classroom full of shy kids. We each have a powerful story, but we often feel too intimidated or exhausted to tell it to the people who most need to hear it: lawmakers, federal agencies, friends, and family.

But thank goodness for Rare Disease Week, Feb. 24-26 this year. This multiday event invites rare disease advocates from across the nation to educate Congress and push for policy changes from government leaders.

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January 21, 2026 by Bionews Staff

Huntington’s disease advocacy means using your voice, being heard

In past columns, I’ve written about the frustration Jill and I felt when Congress failed to pass the HD Parity Act, which would remove the long wait for Medicare coverage that many people with HD face. I have also described how a planned day of advocacy on Capitol Hill was derailed by life, reminding us that even our best intentions sometimes collide with the realities of this disease.

This column is my gentle nudge to say that your voice matters. Even if you can’t participate in Rare Disease Week, there is still a lot you can do from your kitchen table or in your community in the weeks and months ahead.

How you can make a difference

For instance, the Huntington’s Disease Society of America maintains online action centers where you can email your senators and representatives in just a few clicks to support HD-related legislation and initiatives. You can personalize the message by sharing a brief version of your story: who in your life has HD, the challenges you face, and what you hope Congress will do.

You can also call your legislators’ district offices to request a brief meeting, either by phone or video. Think of it as a mini-Hill visit without the travel-related stress. These grassroots efforts are how we as individuals can contact Congress directly. Ask friends, family, and co-workers to contact their legislators as well. You can share information about HD or what your family is going through on social media, tagging your members of Congress.

If you are thinking, “My small action won’t make a difference,” I ask you to remember that you, like the children Jill worked with, can remain shy — or you can recognize that speaking up and taking action are small acts of courage that can help change hearts and minds.

Rare Disease Week is a wonderful and much-needed opportunity to advocate. It’s our chance to raise our hands and say, “Rare diseases, including Huntington’s, are here, and they all need your attention.”

But it’s only a week. We need more people affected by HD to raise their voices over the weeks, months, and years ahead to secure the policy changes and research needed to help our community — because our voices and stories matter.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.