Holly was diagnosed with Huntington's Disease in October 2023. Her husband Mikey says the UC Davis care team didn't just treat her — they walked into the journey with them.
Holly was diagnosed with Huntington's Disease in Sacramento in October 2023 — by the UC Davis care team who would go on to become, in her husband Mikey's words, true partners in their journey.
Mikey and Holly speak about their experience with the UC Davis HD Center of Excellence
"Their care for us is not transactional," Mikey says. "They are in this journey with us."
It's a distinction that matters enormously to families navigating HD. So much of medicine is transactional — appointments, prescriptions, referrals, forms. What the UC Davis HD Center of Excellence offers is something rarer: a team that shows up for the whole person, and the whole family.
What Holly Is Facing
Huntington's Disease is a hereditary, fatal neurological condition with no known cure or disease-modifying treatment. It causes the progressive breakdown of nerve cells in the brain — affecting movement, cognition, and personality simultaneously. Doctors often describe it as living with Parkinson's disease, ALS, and Alzheimer's at the same time.
Holly's diagnosis in 2023 set a course that most families describe the same way: overwhelming, isolating, and utterly unlike anything the medical system is built to handle.
Standard neurology practices are not equipped for HD. The disease is rare enough — affecting roughly 1 in 10,000 people — that most general neurologists see only a handful of HD patients in their careers. What HD families need is a team with deep, specific expertise: in the disease's neurological progression, its psychiatric dimensions, its genetic implications for children and siblings, and the social infrastructure that keeps families from falling apart under its weight.
That is what the UC Davis HD Center of Excellence provides.
Meeting Patients Where They Are
Every HD patient's journey is different. The progression varies. The emotional experience varies. The family dynamic varies. What Mikey noticed immediately about the UC Davis team was their commitment to meeting Holly — and him — exactly where they were.
"Each patient's journey is unique in and of themselves," he explains, "and they aim to meet us where we are to best support us in that moment."
That support takes many forms. Physical therapy to manage the involuntary movements — the chorea — that HD causes as it progresses. Occupational therapy to help Holly maintain independence for as long as possible. Psychiatric support to address the mood changes and cognitive shifts that are as much a part of HD as the physical symptoms. Help navigating the administrative side — including filing for disability, which for many families is as overwhelming as the diagnosis itself.
And virtual support groups, for both patients and their families, creating connection with others who truly understand.
"That to me is what is so empowering," Mikey says. "The boots on the ground — making the most difference."
The Team Behind Holly's Care
Mikey wanted to name the people who have shown up for his family. Not just the institution — the individuals.
"The team here locally that's making the most difference for us is Dr. Duffy, Dr. Campos, Dr. Hart, Lisa Mooney, and the rest of the team behind the scenes who I know are there advocating and supporting us regularly."
He paused before adding: "I don't know what I would be doing without them. They are responsive. They are timely. They are supportive. They are understanding."
For a family in the middle of one of life's hardest seasons, those four words — responsive, timely, supportive, understanding — are everything.
Dr. Alexandra Duffy, the Director of the UC Davis HD Center of Excellence, leads a team that includes movement disorder neurologists specializing in HD, psychiatrists with HD-specific training, a genetic counselor, a social worker, and physical therapists — all coordinated around the needs of each patient and family. It is a model of care that exists almost nowhere else in the region. For Northern Nevada families, the clinic in Sacramento is the closest HD specialty care available — over 130 miles from Reno.
The Weight of Being a Caregiver
What often goes unsaid in HD stories is the burden carried by the people who are not the patient.
Mikey is Holly's husband and her primary support. He shows up to every appointment. He manages the paperwork. He holds things together at home while also grieving — because caregivers grieve too, often in real time, watching someone they love change in ways that have no good name.
The UC Davis team sees caregivers as part of the patient. They run support groups specifically for families and caregivers. They make sure Mikey is resourced, not just Holly. They understand that HD does not just happen to the person with the diagnosis.
"We cannot have the quality of life that we have if it wasn't for you," Mikey said directly to the team.
Holly, characteristically direct, added her own thanks: "Thanks guys for helping me figure out how to take care of myself to the best of my ability."
What This Means at a National Level
Beyond their own experience, Mikey and Holly see the UC Davis team as part of something larger — a national movement pushing the frontier of HD research, advocacy, and eventual cure.
The HDSA nationally is at the forefront of research and development, organizing events for awareness and fundraising, and helping to push advocacy for everyone affected by HD. And locally, the UC Davis team is the embodiment of that mission.
The clinic participates in active research trials. Its team contributes to the broader scientific understanding of HD progression and management. When a patient at UC Davis joins a clinical trial, they are not just getting access to cutting-edge care — they are contributing data that could help HD families everywhere.
Why NVforHD Is Fighting for This Clinic
The UC Davis HD Center of Excellence is NVforHD's chosen cause for both 2025 and 2026. The clinic serves over 90 Northern Nevada families and operates entirely on private donation. There is no state guarantee. No endowment protecting it.
Every year, the team's continued operation depends on the generosity of people who understand what is at stake.
Mikey and Holly's story is exactly why. Behind every dollar raised at the NVforHD golf tournament is a real family — navigating something unimaginable, held up by a team that refuses to be merely transactional.
Join us May 29, 2026 at Gray's Crossing Golf Club, Truckee, CA. Every round of golf goes directly to the UC Davis HD Center of Excellence. Register or donate →
Read more patient stories: Tiffany's story · Leilani's story
