Zero overhead. One cause per year. Every dollar tracked. Here is exactly what NVforHD has raised, where it went, who it helped, and what your donation or tournament entry pays for in 2026.
Before you donate to any organisation, you deserve to know exactly where the money goes.
No vague mission statements. No administrative percentages buried in footnotes. No "up to" language.
Here is the NVforHD transparency report — plain, direct, complete.
The Model
NVforHD is a Nevada-based non-profit. Every year we host one charity golf tournament. Every dollar raised goes to one chosen cause — selected specifically because it creates maximum direct impact on HD patients and families in our region.
We do not split proceeds across multiple organisations. We do not take an administrative percentage. We do not have paid staff drawing salaries from the tournament revenue.
The model is intentionally simple: raise it, give it, prove it.
2024: HelpCureHD and the Puccini Family
Amount raised: $25,000 Beneficiary: HelpCureHD Purpose: IVF with preimplantation genetic testing for one HD family
The 2024 inaugural tournament at Old Greenwood Golf Club in Truckee sold out. $25,000 was raised and transferred in full to HelpCureHD — a non-profit founded by MLB pitcher Joe Smith and TNT reporter Allie LaForce after Joe's mother Lee was diagnosed with HD and passed away at 61.
HelpCureHD went through their grant cycle and selected Brandon and Rylee Puccini — a young Northern Nevada couple carrying the HD gene who could not afford IVF.
Rylee is now pregnant. Their baby will not have Huntington's Disease.
"One golf tournament. One day. One family's next generation freed from this disease. That is the proof of concept."
What the $25,000 paid for:
- IVF cycle including egg retrieval and fertilisation
- Preimplantation genetic testing (PGT-M) to identify HD-free embryos
- Embryo transfer procedure
- Initial monitoring and support
2025: UC Davis HD Center of Excellence
Amount raised: Proceeds from 2025 tournament Beneficiary: UC Davis Huntington's Disease Center of Excellence, Sacramento CA Purpose: Operational funding for Northern Nevada's only HD specialist clinic
In 2025, NVforHD shifted focus to the 90+ Northern Nevada families already living with HD — families who need ongoing specialist care, not just a one-time intervention.
The UC Davis HD Center of Excellence is the closest HDSA-designated HD specialist clinic to Reno. Families drive 130 miles to Sacramento because it is the only option within reach.
The clinic operates entirely on private donation. It employs:
- 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
2026: UC Davis Again
Beneficiary: UC Davis Huntington's Disease Center of Excellence Goal: Continued operational funding for the clinic
In 2026 we return to UC Davis. The need is ongoing and urgent. Private funding is not guaranteed year to year — it must be actively raised.
Your round of golf on May 29 at Gray's Crossing, Truckee CA keeps this team funded.
How Your Money Moves
There is no step where money is diverted, held, or skimmed.
What Each Amount Funds
| Your Contribution | What It Supports | |---|---| | $100 donation | Keeps a Nevada HD family connected to specialist care | | $220 single entry | A half-day of genetic counseling at UC Davis | | $880 foursome | A month of specialist care for one HD patient | | $3,000+ sponsorship | Operational funding for a specialist's time |
One More Thing
NVforHD was founded because Sean Schaeffer's wife Christine was diagnosed with Huntington's Disease. This is personal. The board has skin in this game — not in a metaphorical sense, but literally. Christine is one of the 90+ families served by UC Davis.
That is why the overhead is zero. Learn more about our causes page for the full year-by-year breakdown. That is why the cause is chosen carefully. That is why the accountability is public.
Join us May 29 or donate now — and know exactly what you are funding.
