What Is Huntington's Disease? The Truth No One Tells You Until It's Too Late

Huntington's Disease is one of the most devastating neurological conditions a family can face. Yet most people have never heard of it — until the day it enters their lives and changes everything.

This is for those people. The ones who just received a diagnosis. The ones whose parent tested positive. The ones reading this at 2am trying to understand what comes next.

What HD Actually Feels Like

Neurologists describe HD as Parkinson's disease, ALS, and Alzheimer's disease — simultaneously. In one body. In one person you love.

Motor control deteriorates. The hands that used to hold yours start to shake uncontrollably. Walking becomes difficult, then impossible. Swallowing becomes dangerous.

Cognition declines. The person you married starts to forget. Then struggles to follow conversations. Then can no longer recognize the people they spent their life with.

Psychiatric symptoms — depression, anxiety, sudden rage, impulsivity — often appear first. Years before any physical sign. Many families spend years not knowing why someone they love has changed.

The Inheritance That Cannot Be Escaped

HD is caused by a mutation in the HTT gene on chromosome 4. It follows an autosomal dominant inheritance pattern. That means:

• If one parent carries the mutated gene, each child has a 50% chance of inheriting it
• Anyone who inherits the mutation will develop HD — there are no exceptions
• Most people develop symptoms in their 30s, 40s, or 50s — after they have already had children

"By the time a parent is diagnosed, the next generation is already grown. Already potentially carrying the same future."

This is the particular cruelty of HD. Many people pass the gene to their children before they know they carry it.

The Only Way to Break the Cycle

IVF with preimplantation genetic testing (PGT) can screen embryos before implantation. A couple carrying the HD gene can have a child who is completely HD-free. The mutation stops with their generation.

This is not experimental. It works. It has already changed families in our community.

In 2024, the NVforHD golf tournament raised $25,000 for HelpCureHD — a nonprofit that funds exactly this procedure for families in financial need. That money went to Brandon and Rylee Puccini. Rylee is now pregnant. Their child will never know HD from the inside.

One golf tournament. One day. One family's entire future.

Care When There Is No Cure

For the 90+ Northern Nevada families already living with an HD diagnosis, the UC Davis Huntington's Disease Center of Excellence in Sacramento is the only specialist clinic within reach.

130 miles from Reno. It's the closest they can get to care that actually understands this disease.

The clinic runs entirely on private donation. It employs 2 movement disorder neurologists specializing in HD, 2 psychiatrists with specialized HD training, 1 genetic counselor, 1 social worker, 2 physical therapists with HD experience, and 3 research coordinators.

Without private funding, that team cannot operate. Those 90+ families lose the only specialist care available to them.

NVforHD funds that clinic. That is what your participation in our golf tournament — or your donation — directly pays for.

What You Can Do Right Now

If your family is affected by HD: Contact the UC Davis HD Center of Excellence. They serve Northern Nevada and are equipped to help you navigate every stage of this disease.

If you want to help: Join us May 29, 2026 — see the full event details or register at Gray's Crossing Golf Club, Truckee CA. One foursome. One round. 100% of proceeds to HD care. Or donate directly — every dollar goes to the clinic.

If you know a business that cares: Sponsorship opportunities are open for 2026. Your name alongside something genuinely good.

HD is terminal. But the cycle can be broken. And the people who have it right now deserve the best care we can give them.

"This is why we play.

Read the full HD symptoms and stages guide — and contact us to join the fight on May 29."