Collaboration is key to more accessible Huntington’s disease care

My wife, Jill, and I recently visited the retail store Party City to pick out decorations for her mother’s 80th birthday. Jill held up a glittery banner and asked if it was too much. I joked that nothing could ever be too much for our family. Jill smiled and agreed.

Even though Jill describes Party City as her “happy place,” I could see how Huntington’s disease (HD) has affected her ability to concentrate. She was easily overwhelmed as we navigated the aisles. I was reminded how much effort it can take for her to do something that used to be effortless.

Later that night, I thought about how many invisible steps it takes for HD families to show up anywhere, especially for medical care or clinical trials. Planning, energy, and courage all go into something as simple as a trip to a store. That moment made me think about how important it is that we have a structure built around us, including the Huntington’s Disease Society of America (HDSA) and the broader HD community. We work together so that showing up for care and research is as manageable as possible.

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Over time, I have come to see that the support system we rely on is woven by many hands. There are the people living with HD and their loved ones. There are the advocates who organize support groups, share resources, and push for better care. And there is the HDSA, which has built a network of Centers of Excellence and helps make clinical trials possible by partnering with those centers.

These centers are clinics that have earned the HDSA’s stamp of approval, meaning they have the expertise and infrastructure to care for HD families and run trials. When a center is designated this way, it becomes a hub where specialists, such as neurologists, psychiatrists, and social workers, work together to support people with HD and their families. For many of us, that collaboration is the difference between feeling lost and feeling seen.

Clinical trials are a crucial part of this picture. Across medicine, many trials struggle to meet enrollment goals, even for common conditions. Participation in trials for rare diseases is even harder because there are fewer patients spread over large areas. For a rare neurodegenerative disease like HD, where global prevalence is low, each volunteer represents a meaningful part of the potential participant pool. Every person who says yes matters.

Because HDSA’s endorsement helps identify experienced HD centers, those centers often become primary locations for HD clinical trials. Trials need teams who understand HD and can follow complex protocols. But when they are concentrated in a limited number of centers, families may have to travel far. For some, that distance is measured not just in miles, but also in time off work, childcare, and money, which can turn an act of courage into an almost impossible task.

Travel is also shaped by HD symptoms. Movement problems, such as chorea and balance difficulties, can make walking, standing in lines, or sitting for long car rides tiring and uncomfortable. Cognitive changes can affect planning, organization, and memory, making complicated trips harder to manage. Psychiatric and behavioral symptoms, including depression, anxiety, irritability, and apathy, can drain the emotional energy needed to leave home at all. Layered on top of long distances and repeated study visits, these challenges quickly stack up.

This is where communication and collaboration between the HD community and HDSA become essential. Advocates, patients, and families know firsthand which regions lack access, how long the waits are, how draining travel can be, and what kinds of support help. HDSA can use that information to guide where centers are located, how they are supported, and how trials are planned. When those perspectives meet, the result can be more centers in more places, less travel and stress, and a system that feels kinder to the people it is meant to serve.

The goal is a world where patients and families remain the central focus, where there are more centers closer to home, and where taking part in care and research feels possible rather than punishing. That means lifting up the voices of people living with HD and building systems that honor the sacrifices they already make. It also means that, when HDSA places its stamp of approval on a center, the community has a voice in how that center grows, how it supports trials, and how it welcomes future generations.

I keep thinking back to that trip to Party City. If something as ordinary as choosing balloons and banners requires planning, then so does everything else on this journey. Our hope is to encourage the wider HD community and HDSA to keep collaborating with more centers closer to home, clearer communication, and shared decision-making about where trials are run and how families are supported.

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.