There is no HD specialty clinic in Nevada. For over 90 families in Reno, Sparks, and the Sierra Foothills, UC Davis in Sacramento is the closest lifeline they have.
If you live in Northern Nevada and someone in your family has Huntington's Disease, you already know the problem.
There is no HD specialist in Reno. No HD specialty clinic in the state. The closest comprehensive Huntington's Disease Center of Excellence is in Sacramento — at UC Davis Medical Center — over 130 miles away.
For 90+ families in our region, that drive is not optional. See what NVforHD does to keep this clinic funded and learn about HD symptoms and stages. It is the only path to the specialized care that HD demands.
What a Huntington's Disease Center of Excellence Actually Is
The National Huntington's Disease Society of America (HDSA) designates Centers of Excellence at medical institutions that meet strict standards for HD-specialized care. These are not general neurology clinics that see HD patients occasionally. They are purpose-built teams with deep, specific expertise in the disease.
The UC Davis HD Center of Excellence includes:
- 2 Movement Disorder Neurologists who specialize specifically in HD
- 2 Psychiatrists with HD-focused training
- 1 HD Genetic Counselor — guiding families through testing decisions
- 1 HD Social Worker — navigating resources, benefits, and family dynamics
- 2 Physical Therapists with neurological HD experience
- 3 Research Coordinators funded by active study grants
The Funding Reality
Here is what most people do not realize: this clinic does not run on hospital billing revenue. It operates primarily on private donation.
The research coordinators are grant-funded. The specialized psychiatry and genetic counseling positions — the ones that make this clinic more than just a neurology appointment — exist because donors like you make them possible.
When NVforHD decided to support the UC Davis HD Center of Excellence in 2025 and again in 2026, it was a deliberate choice to protect something irreplaceable. If this clinic loses funding, 90+ Northern Nevada families lose their only access to specialized HD care.
What It Means to Our Family
Our founder Sean Schaeffer's wife Christine is one of those 90+ patients. The team at UC Davis has guided Christine and Sean through some of their hardest days — with expertise, compassion, and the specific knowledge that only comes from a team entirely dedicated to this disease.
We are not supporting this clinic as an abstract charity cause. We are supporting the people who are caring for someone we love. And we know that every family in that waiting room in Sacramento is in the same position we are.
What Your Participation Funds
Every dollar raised at the NVforHD golf tournament on May 29, 2026 at Gray's Crossing goes directly to the UC Davis HD Center of Excellence.
Specifically, donations support:
- Maintaining the specialized psychiatric and counseling services that keep families functional through crisis
- Funding research coordinator positions that connect Northern Nevada patients to active clinical trials
- Preserving access to HD genetic counseling for at-risk families facing the hardest decisions of their lives
Join Us
If you are a Northern Nevada family affected by HD — or if you know someone who is — the UC Davis HD Center of Excellence is the resource closest to you.
And if you want to protect that resource, we would love to see you at Gray's Crossing on May 29.
Play golf. Bring a team. Donate if you cannot make it.
Every contribution keeps the lights on for the clinic that keeps our community's HD families going.
