Help shape the future of treatment for Huntington’s disease

As someone whose wife and daughter are gene-positive for Huntington’s disease (HD), I’m always interested in any new studies and advancements in treatment.

So when a friend recently called to let me know that the Huntington’s Disease Society of America (HDSA) is hosting a meeting in November that could potentially help shape the future of treatment, I was eager to learn more.

When I got home, I talked with my wife, Jill, about attending the meeting. It’s an opportunity for people with presymptomatic or early to midstage HD to share their perspectives with the U.S. Food and Drug Administration (FDA), clinicians, researchers, and more. She was interested, but only wanted to participate virtually. One of Jill’s symptoms is anxiety, which makes her less inclined to travel somewhere new, and even worse, talk to people she doesn’t know.

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Our presence matters

I told her we could attend virtually, but being there in person would make a bigger impact. As I looked at her, I saw insecurity flash across her face. I thought back to each time she’s admitted that HD has taken away another little piece of her confidence.

It has been gut-wrenching to hear her admit that she fears “sounding stupid” because she processes things slower. Or to realize that the stress she’s under makes her feel like she’s not in control of what she says. Or to know that she sometimes displays flashes of anger that make her feel self-conscious and not want to interact with strangers. But this time, what she said nearly made me fall off the couch.

“What if I go to the meeting and make a fool of myself or offend someone?” Jill wondered. “Making a good impression is important when you’re asking people to change the status quo. What if I fail the HD community by making a bad impression?”

Jill explained that there have been times she signed up to meet virtually with elected representatives to lobby for the HD Parity Act, and she was the only advocate to show up on Zoom. She said it’s hard to tell people they should invest their time and energy in a group whose members won’t do the same.

I understood her frustration. The reality is that numbers speak volumes. A strong turnout shows the FDA and pharmaceutical companies that our community is engaged, vocal, and deserving of their attention and resources.

The meeting will be held on Nov. 13 from 10 a.m.-5 p.m. ET. Your presence and your story matter more than you might realize. For more details and to sign up to attend, check out the meeting application.

Jill decided the meeting was important enough for us to attend in person, so we’ll both be there. Even if you can’t join us on Nov. 13, you can still make your voice heard in other ways. HDSA has launched an HD Symptoms and Treatment Impact Survey. Your responses can help inform the FDA, National Institutes of Health, and medical product developers about the real challenges of living with Huntington’s and what we value in potential new treatments.

To stay informed about the survey and meeting details, you can sign up for advocacy updates from HDSA.

Remember, when we come together as a community, our collective voice becomes impossible to ignore. Let’s show the decision-makers that Huntington’s research and treatment development must remain a priority. Our future depends on it.

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.