Brandon and Rylee Puccini are expecting a healthy baby, HD-free. It started with a golf tournament in Truckee and a grant from HelpCureHD. Here is how preimplantation genetic testing is changing the story for HD families.
In 2024, NVforHD raised $25,000 at our inaugural golf tournament at Old Greenwood in Truckee.
That money went to HelpCureHD — see where all NVforHD money goes. See our full transparency report. HelpCureHD put it through their grant cycle — vetting families in genuine financial need who carried the Huntington's Disease gene mutation. And they selected Brandon and Rylee Puccini.
"Brandon and Rylee are now expecting. Their baby will not have Huntington's Disease.
That is what $25,000 and one sold-out golf tournament did.
The Science Behind It
Huntington's Disease is caused by a mutation in the HTT gene — specifically, an expanded CAG repeat sequence. It is inherited in an autosomal dominant pattern: if you carry the mutation, each of your children has a 50% chance of inheriting it.
Until recently, HD-positive individuals who wanted children faced an agonizing choice: risk passing on the disease, or not have biological children.
Preimplantation Genetic Testing (PGT) changed that equation.
Here is how it works:
The result is a child who is genuinely free from Huntington's Disease. Not just unaffected — free. They cannot pass it to their own children either, because they do not carry the mutation.
The Barrier: Cost
IVF with PGT is not covered by most insurance plans for genetic disease prevention. A single full cycle — retrieval, fertilization, genetic testing, and transfer — typically costs between $15,000 and $30,000.
For a couple already dealing with an HD diagnosis in the family, navigating medical care, potential caregiving, and the emotional weight of the disease, that cost is out of reach.
This is the gap HelpCureHD exists to fill.
HelpCureHD: The Organization
HelpCureHD was created by Joe Smith — MLB pitcher and son of Lee Smith, who was diagnosed with HD in 2012 and died in 2020 at 61. Joe and his wife, sports reporter Allie LaForce, made a promise to his mother: to end Huntington's disease one family at a time.
HelpCureHD provides grants to HD-positive families who need financial assistance to access IVF with PGT. To date, they have helped over 135 families nationally.
Each family they help potentially ends a multi-generational chain of suffering. One grant. One cycle. Potentially hundreds of HD-free descendants across future generations.
What Rylee and Brandon Said
After their IVF cycle succeeded, Rylee and Brandon wrote to NVforHD. Their letter hangs in our hearts.
"Thank you for gifting us with the miracle of life — and specifically life that is Huntington's free."
That letter arrived because a group of golfers showed up in Truckee on a beautiful day in 2024 and decided to help.
What This Means for 2026
In 2026 our focus shifts to the UC Davis HD Center of Excellence — the clinic serving 90+ Northern Nevada families who need ongoing specialized care. But the work HelpCureHD does continues, and the families they are still helping deserve to know this path exists.
If you or someone you know is HD-positive and considering having children, genetic counseling is the first step. The UC Davis HD Center of Excellence — which NVforHD supports — has a dedicated genetic counselor on staff specifically for this.
And if you want to be part of making more stories like Brandon and Rylee's possible, join us on May 29, 2026 at Gray's Crossing at Gray's Crossing Golf Club in Truckee.
You do not have to be a golfer. You can donate directly. Every amount matters, because we have seen exactly what it can do.
