Sixteen years ago, Leilani Dunmoyer's mother was diagnosed with Huntington's Disease. Today, Leilani is gene-positive, her brother has HD, and her three children are at risk. The UC Davis team has been with them every step.
Sixteen years ago, Leilani Dunmoyer's mother received a diagnosis that the family had never heard of.
Leilani Dunmoyer — gene-positive, HD family advocate, and marathon runner for the HD cause
Huntington's Disease.
"It came as such a shock," Leilani says. "We did not know where to turn. We just felt hopeless and helpless."
What followed is a story that too many HD families know — the desperate search for information, for community, for someone who understands. But for Leilani, living in Sacramento, that search led somewhere remarkable.
"Thankfully we live in Sacramento and I found the UC Davis Center of Excellence."
What the Dunmoyer Family Is Living With
To understand Leilani's story, you have to understand what Huntington's Disease actually does — not just to the person diagnosed, but to every person around them.
HD is a hereditary, fatal neurological disorder with no known cure. It causes the progressive destruction of nerve cells in the brain, producing a constellation of symptoms that doctors compare to experiencing Parkinson's disease, ALS, and Alzheimer's simultaneously. Movement becomes involuntary and uncontrolled. Cognition declines. Personality and behavior shift in ways that can be as painful for families to witness as the physical progression.
And because HD is genetic — carried on a dominant gene that passes from parent to child — a single diagnosis ripples through generations.
Leilani's mother was diagnosed. Her brother has HD. Leilani herself tested gene-positive, meaning she carries the mutation and will develop the disease. And her three children face the same 50% chance that Leilani did.
"We are committed," she says simply. "We are part of the Huntington's family."
That sentence carries everything — the grief, the determination, the strange solidarity that HD families find with one another. When you live inside an HD family tree, you do not get to be a bystander. You are in it.
A Team That Becomes Family
The UC Davis HD Center was first run by Dr. Wheelock, and now by Dr. Alexandra Duffy — a nationally recognized HD specialist and Clinical Professor at UC Davis. Leilani has been a patient of the clinic through both.
"We have been so, so grateful for them and all of the love and support that they have offered us over the years," she says. "They have definitely become like family — right from the get-go."
That phrase — "right from the get-go" — speaks to something important. The UC Davis team doesn't take time to warm up to their patients. They arrive fully present from day one.
This is not how most medical care works. Particularly for a rare disease like HD, patients often spend years navigating doctors who are unfamiliar with the disease, who offer generic neurological care that doesn't address the psychiatric dimensions, who don't know about the genetic counseling resources that could help siblings and children understand their own risk.
The UC Davis HD Center of Excellence is different because it is built specifically for this. The team includes movement disorder neurologists who specialize in HD, psychiatrists with HD-specific training, a genetic counselor who works with at-risk family members, a social worker who helps families access resources and navigate the system, and physical therapists with neuro specialty and experience in HD. They run clinical research trials. They coordinate across disciplines so that each patient's care is genuinely integrated.
For Leilani — gene-positive, with a mother and brother already affected, and three children who will one day face their own testing decision — having that team in her corner is not a luxury. It is a lifeline.
Running Toward Something
Rather than retreating from the reality of HD in her family, Leilani has leaned into advocacy with everything she has.
She participates in clinical trials through UC Davis whenever she can. Every trial she joins adds data to the science — data that could, eventually, lead to the treatment that changes the trajectory for HD families everywhere. She understands that her participation is an act of contribution to something larger than her own diagnosis.
And she runs. Marathons. Wearing the CA for HD shirt — Team HD — to represent California in the national fight.
"Any chance we get to participate in clinical trials, we do," she says. "And any fundraisers — particularly, I'm a runner and getting to run marathons to raise awareness and raise money for Huntington's — it's just been great."
There is something profound about a person who knows what is coming choosing to run toward it.
Why Geographic Access Is Everything
For families in Northern Nevada, the UC Davis HD Center of Excellence isn't just the best option — it's the only option within reach.
The clinic is over 130 miles from Reno. For families making that drive, the round trip is a full day. It requires planning, time off work, childcare, fuel — on top of everything else HD is already asking of them.
Leilani is fortunate to live in Sacramento, close to the clinic. But the 90+ Northern Nevada families the center serves do not have that proximity. For them, the question of whether the UC Davis center remains funded and fully staffed is not abstract. It determines whether they have access to any specialist HD care at all.
That is exactly why NVforHD exists. The annual golf tournament is not a gala. It is the mechanism that keeps a team of specialists in place for families who have nowhere else to go.
"So Grateful to Be Part of This Wonderful Team"
Leilani ended her message the way she lives — with gratitude and forward momentum.
"I'm so grateful to be a part of this wonderful team. Thank you so much for letting me share my story."
She is not just a patient. She is a runner, an advocate, a mother, and a voice for everyone in the HD community who once felt exactly what she felt sixteen years ago — hopeless and helpless — until they found the right people.
The UC Davis HD Center of Excellence gave Leilani's family a place to land. NVforHD is fighting to make sure it stays there.
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. Join us or donate →
Read more patient stories: Tiffany's story · Mikey & Holly's story
