I've been part of the Huntington's disease community for more than 25 years — first as someone who learned that HD was in my husband's family, then as a care partner watching the disease slowly change people I love, and always as someone who believes there’s hope.

HD is devastating in ways that are hard to explain to people who haven't lived it. It's not just watching the advance of the symptoms: the movements, the cognitive loss, the psychiatric issues, the eventual loss of independence. Because there is a genetic test, many families know with certainty — sometimes for decades, long before symptoms appear — who will develop Huntington’s. That fundamentally changes how we experience the disease.

That weight is real. And it makes having a center like Hopkins — one that treats the whole family, not just the patient — matter even more. What I know, both as a care partner and as a member of the Johns Hopkins HD Advisory Board, is that this Center has been there every step of the way for my family. The care is exceptional. The research is meaningful. And the doctors, the social workers, the clinic staff treat patients and families like we matter, because they genuinely believe we do.

There is still no cure. There is no approved treatment that slows this disease. Philanthropic support is not a nice-to-have for a center like this — it's what makes the research possible, what keeps the care accessible, and what gives families like mine something to hold onto.

We’re in a moment of amazing opportunity. Huntington’s may be one of the most scientifically understandable neurodegenerative diseases. It has a known genetic cause. We are closer than ever to disease-modifying therapies. The urgency now is translating that science into access and treatments, which will have benefits for everyone experiencing the devastation of neurodegenerative diseases.

I'm raising money for the Hopkins HD Center because I believe in this work, and because I know what it costs to do it well. If you're able to give — at any level — I'm grateful. Thank you for showing up with support for our family and for all the families living with Huntington's disease.