In the late 1990’s, former PR Director for the San Diego Chargers Bill Johnston noticed some unusual behaviors in his wife, Ramona. A former teacher turned stay-at-home mom to two children—Jared and Hayley, it began with Ramona forgetting things and progressed to changes in her every day mannerisms—including the way she walked. After a few minor car accidents in a short period of time, they went from doctor to doctor appointment to find some answers.
After a few months, a diagnosis from a doctor turned their world upside down: Huntington’s Disease. Symptoms of HD are typically categorized into three orders: movement, mood and memory. As their daughter Hayley said recently in an ESPN feature video produced just a few weeks ago, “No one fully understands until they see it.”
Symptoms start gradually but increase over time. Basic tasks such as eating, walking, talking and thinking become extremely difficult over time. Ramona has lived in a skilled care facility for over the past 10 years since her diagnosis. Bill, now a special advisor to the San Diego Padres, starts every morning just as the sun comes up by visiting her.
Often referred to as the “Devil’s Disease,” Huntington’s Disease is a genetic neurological disorder with no cure. Said to be a combination of symptoms found in those diagnosed with ALS, Alzheimer’s, and Parkinson’s all in one, Huntington’s is fatal—often between 15 to 20 years post diagnosis. Genetic testing is the main criteria for diagnosis, and children have a 50 percent chance of inheriting the gene from a parent who has it. HD, as it is referred to as, occurs in males and females equally and symptoms typically begin between 30 and 50 years of age.
Approximately 30,000 people in the United States have HD. “There are no quick fixes; no shortcuts, no easy answers, particularly for a relatively unknown disease like Huntington’s disease,” said Johnston, now 60. “We have had to work twice as hard just to make people aware of the horrible nature of the disease before we can even start telling them how they can help.”
That is why this weekend Johnston and his daughter Hayley will be racing the Synchrony Rock ‘N’ Roll San Diego Marathon to raise money for research and treatment. He will push Ramona in a modified jogging stroller for all 26.2 miles, helping to put a face to the disease.
“The biggest boost for both of us was when we found a chair capable of carrying Ramona as we ran. We’re doing this for her. And it’s so important for people to see someone with the disease to truly understand it’s terrible nature.”
This will be the ninth race the two have ran together. Johnston, a Santee, Calif. resident wants people to know that his goal for racing is to create awareness and to help others navigating this relatively unknown disease.
“It’s not about us,” he says. “The funds we have raised have come through the hard work of a lot of caring volunteers in San Diego and the generosity of too many people to mention.” Through his running, he is inching closer to the $1 million mark. Through running and the various events their chapter has put on, the number is closer to $4 million.
“But that’s just a drop in the bucket of what’s truly needed,” he adds.
Running has been an outlet for Johnston. As he puts it, “it’s a chance for me to get away from day-to-day life and just think through all I have going on in my life. I can’t tell you how many times I’ve come up with an answer to an issue or a new idea while I’m out running.”
While lacing his shoes up and running the local routes, speaking at engagements, holding charity events, and being at the start line at many races, the town of San Diego has embraced his journey of educating others about HD.
“In a lot of ways, San Diego is really just an extra-large small town. Being a part of San Diego’s sports teams and working with so many great people has helped me bring added attention to the disease.”
Known as the “birthplace of California,” San Diego is a town for embracing its own and welcoming visitors, including those running the Synchrony Rock ‘N’ Roll San Diego Marathon. “On Friday before the race, get a great carb load at one of the great spots in Little Italy or maybe Arrivederci in Hillcrest,” said Johnston. “After the race, you gotta’ go big with beer and Mexican food—there are too many spots to mention. And if you’ve never been to Petco Park, catch a game while you’re here. It’s the number-one ballpark in America.”
To learn more about Bill, Team to Cure HD and donate to the cause, head to: https://www.justgiving.com/fundraising/teamtocurehd
Resources for HD can be found at: http://hdsa.org/