The Huntington’s community fills me with gratitude and hope

As Huntington’s Disease Awareness Month comes to a close, my heart keeps returning to one word: gratitude.

Huntington’s disease (HD) is serious. It can change the way a person moves, thinks, speaks, works, relates, and dreams. It can place an enormous weight on families long before symptoms even appear. It asks caregivers to become advocates, nurses, organizers, appointment keepers, medication managers, financial planners, and emotional anchors. It asks medical professionals to look beyond a diagnosis and see the person sitting in front of them. It asks researchers to keep asking hard questions, even when the answers take years.

I am grateful for the caregivers who love in ways the world does not always see. The spouse who quietly learns medication schedules. The parent who grieves and keeps showing up anyway. The adult child who becomes responsible sooner than expected. The friend who sits through the hard moments without trying to fix them.

Caregiving is not just a role. It is a daily act of devotion. It is exhausting, sacred, complicated, and often invisible. This month, I want caregivers to know that I see you. The HD community sees you. Your labor matters. Your grief matters. Your rest matters, too.

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I am also grateful for the medical professionals who choose compassion. I have lived through medical gaslighting, racial bias, dismissal, and moments when people did not believe what was happening in my own body. That is why I never take a good provider for granted. A physician, nurse practitioner, registered nurse, therapist, psychiatrist, social worker, pharmacist, or genetic counselor who listens can change the entire experience of care. When a medical professional treats us as human beings rather than as symptoms, it restores our dignity. When they explain without talking down to us, it builds trust. When they believe us, they help heal something that medicine alone cannot touch.

And then there are the researchers. I am deeply grateful for the scientists, clinical trial teams, patient advocates, and families who participate in research. Every blood draw, spinal tap, brain scan, survey, appointment, and hard conversation contributes to something bigger than one person. Research can feel slow when you are living with a progressive disease. Families want answers now. We want treatments now. We want relief now. But I also know that every step forward has been built by people who refused to give up.

Hope is not a small thing

Today, there is real reason to hope. For many years, HD treatment focused mostly on managing symptoms. Those treatments matter. Anything that improves quality of life matters. But now, the conversation is growing.

Scientists are studying ways to decrease the amount of the huntingtin protein, including gene-silencing approaches that aim to reduce the toxic protein driving the disease process. Recent gene-therapy and huntingtin-lowering research has sparked a level of hope that many families have been waiting generations to feel.

It does not mean everything is solved. It does not mean every treatment will work for every person. It does not erase the grief of what HD has already taken. But it does mean the future may not have to look like the past.

That sentence alone gives me chills.

For families who have watched generation after generation suffer from this disease, hope is not a small thing. Hope is oxygen. It’s the reason people sign up for clinical trials, why caregivers keep going, and why researchers return to the lab. Hope is why advocates keep telling the truth, even when our voices shake.

I do not believe hope means pretending HD is easy. It is not. I do not believe hope means ignoring the pain. We cannot heal what we refuse to name. But I do believe hope means allowing ourselves to imagine something different: a future where people with the HD gene have more options. A future where symptoms can be delayed, slowed, or prevented. A future where families are not only preparing for decline, but planning for possibility.

Even as the awareness month comes to an end, I carry gratitude for everyone walking beside this community: caregivers, clinicians, researchers, advocates, and families. Each person plays a role in moving us forward.

HD has taken a lot from many of us, but it has not taken our ability to love, fight, or hope.

And hope, when carried by a community, becomes powerful.

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.