It’s 10:30 on a windy Thursday morning, and Jef Alcorn’s round of golf is going well. He’s at four under par, which is especially good when you realize that he’s played 54 holes of golf this morning, with a goal of 200 by end of the day.
Alcorn is one of the golf pros at Birmingham’s Bent Brook Golf Club, so playing a lot of golf is not unusual for him. But this golf marathon is special.
“I’m trying to raise some awareness and some funding for Huntington’s disease research,” Alcorn says. “Most people don’t know what Huntington’s is. So the golf marathon — the 200 holes — provides a little shock value and opens people’s eyes.”
Alcorn knows all about HD. His father was diagnosed with the hereditary neurodegenerative disease a few years ago. And in January of this year, Alcorn found out he has the gene that leads to HD, too.
Huntington’s disease is caused by a mutation in a single gene. If one of your parents has it, there is a 50 percent chance you’ll get the gene. It’s a neurodegenerative disease not unlike Alzheimer’s or Parkinson’s disease. And like those diseases, there is no cure.
Huntington’s causes movement issues, involuntary actions and difficulty walking. It leads to cognitive problems such as memory loss. And there are behavior issues, as many patients must cope with anxiety and depression. There are about 30,000 HD patients in the United States.
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Huntington’s causes movement issues, involuntary actions and difficulty walking. It leads to cognitive problems such as memory loss. And there are behavior issues, as many patients must cope with anxiety and depression. There are about 30,000 HD patients in the United States. |
“A lot of people have described it as a ticking time bomb,” says Victor Sung, M.D., assistant professor of neurology at the University of Alabama at Birmingham and Alcorn’s doctor. “You have the gene and you know you will develop the disease at some point. It’s hard to grapple with that.”
Alcorn’s solution is to use the talents he has to garner attention for the disease. His golf marathon is raising money from friends and families and fellow golfers. Those funds will go to the UAB Huntington’s Disease Research Program.
“I think it is important to get as much data out there as possible, as much information about HD,” Alcorn says. “Why is this person showing signs at this age? What did he or she do differently in terms of lifestyle? Or maybe that doesn’t even matter? Either way, I think getting the data out there is crucial.”
Sung says that since HD is caused by a mutation in a single gene, researchers have a better target for cures or therapies than for diseases like Alzheimer’s or Parkinson’s, which have multiple causes. But there is no cure now, and the existing treatments only help to manage the symptoms.
“There is promising work going on around the world” says Sung. “The mutated gene causes an abnormal protein leading to negative effects throughout the body, particularly in the nervous system. People are working on ways to block that abnormal Huntington’s gene from being expressed into a protein or block the protein from being effective. It’s an exciting time.”
But it’s also a tough time for Jef Alcorn. Most people begin to see symptoms between the ages of 30 and 50. At 45, Alcorn is still symptom-free. He has two boys — who may or may not have the gene, too.
“I worry a little bit more throughout the day about my kids and when and if this disease starts striking me,” he says. “It makes you think you need to move a little faster on a lot of things, occupations and your time and things like that.”
Alcorn writes a letter a day to somebody about Huntington’s disease: celebrities, old friends, physicians, researchers. He just wants to open doors, spread the word and get people talking about HD. This is not a time to hide his condition, he says. It’s a time to push for awareness and understanding. It’s a time to work toward a cure.
“I’ll tell you what the disease has done for me: I have no fear,” Alcorn says. “Nothing makes me really scared anymore. Missing a three-foot putt in a golf tournament? There’s no fear. I’m just living every day and trying to do what I can in a small way to help.”