When Tiffany's husband started showing symptoms of Huntington's Disease, they didn't know where to turn. Then they found the UC Davis HD Center of Excellence — and everything changed.
Twenty-four years ago, Tiffany's father-in-law called with news that would change everything. He had Huntington's Disease.
Tiffany shares her family's 24-year journey with Huntington's Disease and the UC Davis care team
"We knew nothing about it," Tiffany recalls. "I started researching, but it wasn't until 2005 that our journey really began."
That was the year her husband started showing symptoms at work. Subtle at first — the kind of changes that are easy to explain away. Difficulty concentrating. Small involuntary movements. A shift in mood that didn't quite fit the man she knew. But Tiffany had been living with the knowledge of HD in their family for years. She recognized what she was seeing.
They made the decision to get him tested. The results confirmed what they feared.
What followed set in motion a relationship that Tiffany says has been one of the defining pillars of their family's life — their connection to the UC Davis Huntington's Disease Care Team.
What Huntington's Disease Actually Does to a Family
To understand what the UC Davis team means to Tiffany's family, you have to understand what HD actually is.
Huntington's Disease is a hereditary, fatal neurological disorder with no known cure. It causes the progressive breakdown of nerve cells in the brain — producing a combination of symptoms that doctors often compare to experiencing Parkinson's disease, ALS, and Alzheimer's simultaneously. Movement deteriorates. Cognition declines. Personality and behavior change in ways that can be as hard on the family as on the patient.
And it is inherited. If one parent carries the HD gene, each child has a 50% chance of inheriting it. That means Tiffany's husband's diagnosis wasn't just about him — it cast a shadow over their entire family's future.
There is no treatment that slows HD. No drug that changes its course. What families have is time — and the quality of support they receive during that time.
That is what makes the UC Davis HD Center of Excellence so important.
"Surrounded by People Who Understood"
Most families facing an HD diagnosis describe the same feeling in those early days: isolation. The sense that nobody in the medical system truly understands what you're going through. General neurologists know HD exists — but few have deep experience with its specific progression, its psychiatric dimensions, the genetic counseling its families need, or the social and emotional weight it carries.
Tiffany experienced the opposite.
"From the moment we connected with them, we were surrounded by people who understood what we were going through," she says. "They didn't just treat the medical side of Huntington's Disease. They cared about the whole journey."
The UC Davis HD Center of Excellence is one of only a handful of HDSA-designated Centers of Excellence in the country. Unlike a general neurology practice, the clinic is built specifically around HD. The team includes movement disorder neurologists who specialize in HD, psychiatrists with HD-specific training, a genetic counselor, a social worker, and physical therapists — all coordinated around the needs of HD patients and their families.
Finding out the results was devastating. But the UC Davis team gave them hope from day one — sharing information on clinical trials they could participate in, making sure they were informed, and treating them with what Tiffany describes simply as "so much kindness."
Two Hours Each Way — And They Made It Worth It
The family had to travel two hours each way to reach their appointments in Sacramento.
For many Northern Nevada families, the UC Davis clinic in Sacramento is the closest HD specialty care within reach — over 130 miles from Reno. It is not a short trip. It takes planning, time off work, childcare arrangements, fuel. For a family already managing the emotional and physical demands of HD, that logistical burden is real.
"They always were respectful and grateful of our time and participation," Tiffany says.
That kind of acknowledgment — that the team understood what it cost this family just to show up — meant more than any clinical protocol ever could. It is a small thing to say and a significant thing to mean.
"We Knew We Were Not Alone"
For families living with HD, the emotional weight is as crushing as the physical reality of the disease. The not-knowing. The watching. The waiting. The slow reckoning with what lies ahead.
What the UC Davis team gave Tiffany's family was something no prescription can provide.
"Knowing there is a place where we could ask questions, talk openly, and not feel alone made such a huge difference for us," she says. "It gave us guidance, reassurance, and the feeling that we had a team walking this path with us."
They understood not just the clinical side — the symptoms, the progression, the medications that might help manage individual symptoms even if they cannot stop the disease — but what the family was experiencing emotionally.
"That kind of compassion and understanding means more than words can really express."
Twenty-four years is a long time to carry something this heavy. But Tiffany's family has not carried it alone.
Why Supporting UC Davis Matters
The UC Davis HD Center of Excellence operates on private donation. It receives no state funding guarantee. Without ongoing support from donors, fundraisers, and community events like the NVforHD golf tournament, the resources that keep this team intact — and keep it accessible to families like Tiffany's — are at risk.
"Having a team like the one at UC Davis changes the journey," Tiffany says. "They bring knowledge, support, and hope to families who need it."
The UC Davis HD Center serves over 90 Northern Nevada families. It is the only HD specialty clinic within reach for the Reno-Sparks metro and the Sierra Foothills. For many of those families, it is not an option among several — it is the only option.
"They are not just providing treatment," Tiffany says. "They're giving families understanding, connection, and a place where we know we're not alone."
That is exactly what NVforHD is fighting to protect.
NVforHD's annual charity golf tournament — May 29, 2026 at Gray's Crossing Golf Club, Truckee, CA — raises funds directly for the UC Davis HD Center of Excellence. Every dollar goes to the clinic. Join us or donate →
Read more patient stories: Mikey & Holly's story · Leilani's story
