Turning Huntington’s disease awareness into community support

Every year during Huntington’s Disease Awareness Month in May, I think about what awareness really means. It’s not just wearing blue and purple, posting a graphic on social media, or repeating facts about CAG repeats, chorea, and genetics. Those things matter, but awareness has to grow legs and turn into action. It has to become support that people can feel.

There are many people in the Huntington’s disease (HD) community who want to help but may not know where to begin. This includes people who are gene-positive but asymptomatic, people at risk of HD, extended family members, friends, neighbors, co-workers, faith communities, and others who simply care. Sometimes people think they have to do something huge to make a difference. But I’ve learned that some of the most powerful acts of support are practical, creative, and deeply human.

Recommended Reading

May 7, 2026 Columns by Tanita Allen

In raising HD awareness, we must be mindful of the stories we tell

How you can help

One out-of-the-box way to help is to create a community care circle for an HD family. This could be a small group of trusted people who rotate support. One person might bring dinner twice a month. Another might help with transportation to medical appointments. Someone else might sit with the person with HD so the caregiver can go to lunch, take a nap, attend therapy, or simply breathe. Caregiving can be lonely, and the weight of it can be invisible to the outside world. A care circle reminds families that they don’t have to carry everything alone.

Financial burdens are another reality that many HD families face, as the disease can affect employment, insurance, housing, transportation, medication costs, caregiving needs, and daily household stability. One meaningful way to help is to organize a practical needs fund for a family — not in a way that feels like charity, but in a way that honors dignity. This could be a grocery gift card drive, gas card collection, meal delivery fund, cleaning service fund, or medical appointment transportation fund.

Sometimes, the most loving question is not “What do you need?” because overwhelmed families may not know how to answer. Sometimes, it’s better to say, “We would like to cover groceries this month,” or “We would like to help with rides to appointments.”

Another idea is to sponsor respite care. Many caregivers are exhausted, but respite care can be expensive or difficult to arrange. Friends, family members, or local organizations could raise money specifically for caregiver breaks. Even a few hours can matter. A caregiver who gets time to rest is not being selfish; they are being sustained. We cannot say we care about people with HD while forgetting the people who are holding families together behind the scenes.

Asymptomatic people with HD also have a unique role. Their voices matter. They understand the genetic weight of this disease, even if they are not showing symptoms. They can use their energy, time, and visibility to advocate in spaces where symptomatic people may not always have the capacity to do so. This could look like speaking at schools, hosting awareness events, writing letters to lawmakers, organizing fundraisers, participating in research, or helping local HD families access resources.

Awareness can also be creative. Host an HD storytelling night where families share poetry, music, photos, or memories. Create an art show about what it means to live with a genetic illness. Organize a community walk that includes education stations about caregiving, mental health, research, and inheritance. We need more people to understand that HD is not just a movement disorder. It is a family disease, a financial disease, an emotional disease, and a disease that requires community.

Another powerful way to help is to become a “paperwork partner.” Dealing with disability forms, insurance calls, appointment scheduling, medication issues, and resource applications can feel like a full-time job. A trusted person could sit beside a caregiver or family member and help organize documents, make phone calls, create a binder, or track deadlines. That kind of support may not look glamorous, but it can lower stress in a very real way.

Emotional support matters, too. Send the text. Make the call. Remember the anniversary of a diagnosis. Check on the caregiver after the appointment is over. Ask the person with HD what brings them joy, not only what is wrong. Invite families into normal life. Sometimes people disappear because they don’t know what to say, but silence can hurt more than imperfect words.

For me, HD Awareness Month is not only about being seen. It’s about building a community where people feel supported after the awareness posts fade. It’s about turning compassion into meals, rides, respite, money, presence, advocacy, and love. That is powerful awareness. That is community.

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.