Event raises awareness, funds for cure

Event raises awareness, funds for cure
Robert Ramos shows his support to find a cure for Huntington’s disease. Photo by Tony Cagala

SAN DIEGO — With each ball sinking through the hoop and every dollar raised, the Huntington’s disease Society of America, San Diego Chapter reached their fundraising goal during the 11th annual Shoot to Cure HD event held at Chargers Park. 

But what may have been the biggest goal of the night was raising awareness on what some call the “devil of all diseases,” the fatal brain disease that slowly destroys a person’s ability to speak, think and move.

Bill Johnston is the PR director for the Chargers. His wife Ramona Johnston was diagnosed with the disease more than 10 years ago.

For Johnston and his wife it had all started after they both noticed some changes in her. “She had noticed some mental changes, I had noticed some physical changes and she really knew something was wrong,” he said.

But because the disease was nowhere in her family, and it being a genetic disease, it took six months before the words Huntington’s disease emerged.

It was a disease that neither of them had heard of before. A blood test later confirmed the diagnosis.

“It was shocking,” Johnston said. “I just remember that day crying with her out in front of our house in the middle of the street, afraid to go into our house to face our kids and not knowing how to explain this to them; that they had a 50 percent chance of inheriting a fatal brain disease. From that point on it changed our lives.”

Johnston’s son has since been tested and cleared of having the disease, while his daughter will decide later on if she wants to be tested.

Deciding on whether or not to be tested is one of the most difficult decisions for people who have a history of the disease in their family — it’s a decision made all the more difficult as there is currently no cure for it.

Antonio Gates, the Chargers Pro Bowl tight end, is honorary chairman of the HD Society in San Diego. The honor, he said, was his meeting those living with the disease, including Angela Leach and her son Terry, who was diagnosed with juvenile HD when he was 5; on June 30 he’ll turn 15.

The Shoot to Cure HD event helps families like Angela’s to feel like they aren’t alone in their struggle. Every day Angela monitors her son.

“We’re unsure how much time we have with him,” she said. “The Chorea is starting to set in more.”

The HD that affects children is different from the adult-onset HD. But both forms of the disease are degenerative to the brain and result in the loss of cognitive, behavioral and physical control.

But after meeting Terry, there’s always one thing that people remember most about him — his captivating smile.

“You can never tell that anything’s wrong with that kid. He deals with everything so well,” Leach said.

“A lot of people don’t know about Huntington’s disease,” she said. “And it was by me not knowing about it that I had Terry.” Terry inherited the disease from his father. “You don’t think to question one when you’re having children if there’s a genetic disease that could possibly affect your child’s life like that,” she added.

Leach said she continues to hold faith that a cure will be found.

Each year, the Huntington’s disease Society of America holds events to help raise funds for a cure and to raise awareness.

“If we don’t do these kinds of things, we’re missing the opportunity to reach out and raise money and potentially get the right people involved to find a cure,” Johnston said. “Awareness is the number one benefit of an event like this.”

For more information or to make a donation, visit hdsasandiego.org.

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