There is no HD clinic in Nevada. But there is specialist care within reach, a community of families who understand, and an organisation fighting to keep those resources funded. Here is everything Northern Nevada HD families need to know.
If your family has been touched by Huntington's Disease in Northern Nevada, the first thing you discover is the isolation. There is no HD neurologist in Reno. No HD clinic in the state. No in-person support group that meets regularly and specifically understands this disease.
What there is — and what NVforHD exists to protect — is access to the best HD specialist care within reach.
The Closest Specialist Care: UC Davis HD Center of Excellence
The UC Davis Huntington's Disease Center of Excellence in Sacramento is the cornerstone resource for Northern Nevada HD families.
What makes it different from a general neurologist:
A general neurologist who sees one or two HD patients per year cannot provide the depth of care that HD demands. The UC Davis HD Center's team sees HD patients exclusively. They understand the psychiatric symptoms that arrive before the motor symptoms. They know how to manage dysphagia before it becomes dangerous. They can counsel families on genetic testing options with the nuance that situation requires.
The team at UC Davis:
- 2 Movement Disorder Neurologists specialising in HD
- 2 Psychiatrists with specialised HD training
- 1 HD Genetic Counselor
- 1 HD Social Worker
- 2 Physical Therapists with HD experience
- 3 Research Coordinators
How to contact: UC Davis HD Center can be reached through the UC Davis Health system. Your primary care physician can make a referral, or you can contact the department directly.
National Resources for HD Families
HDSA — Huntington's Disease Society of America
The HDSA (hdsa.org) is the primary national resource for HD families. They provide:
- A helpline for families navigating a new diagnosis
- The Center of Excellence network directory
- Research updates and clinical trial information
- Social support programs and family guides
HelpCureHD
Founded by MLB pitcher Joe Smith and TNT reporter Allie LaForce after Joe's mother died of HD, HelpCureHD provides grants to families who carry the HD gene and want to pursue IVF with genetic testing to have HD-free children.
NVforHD partnered with HelpCureHD in 2024 — funding IVF for Brandon and Rylee Puccini in their journey to an HD-free baby.
Website: helpcurehd.com
"You are not alone. NVforHD was built by an HD family — for HD families. We understand what you are carrying because we are carrying it too."
The Genetic Counseling Resource
One of the most under-utilised resources for at-risk HD family members is genetic counseling. The UC Davis HD Center has an HD genetic counselor on staff — not a general genetics counselor, but one who specialises in HD specifically.
They can help with:
- Deciding whether to pursue predictive testing
- Understanding what a positive or negative result means for you and your family
- Navigating the IVF option if you are at risk and building a family
- Supporting adult children of HD patients through their testing decision
What NVforHD Does for This Community
NVforHD funds the UC Davis clinic directly. The tournament revenue goes to keeping their team operational — which means keeping their specialists available to Northern Nevada families.
When you participate in the May 29 tournament at Gray's Crossing, or donate directly, you are not supporting a distant cause. You are funding the clinic that serves your neighbors, your community, and — for our founder Sean Schaeffer — his own family.
If You Are a Northern Nevada HD Family
Reach out to us directly. We are not a support group. We are not a counseling service. But we are an HD family who has navigated these resources, and we will help you find what you need.
📞 775-691-8860 — Call Sean directly ✉ info@nvforhd.com Contact us here — select "My family has HD" and we will respond personally. Not with a template.
You are not alone in this.
