Santa Maria Sun / News
The following articles were printed from Santa Maria Sun [santamariasun.com] - Volume 15, Issue 19
Learn more about Huntington's disease
BY AMY ASMAN
In 2008, Melissa Billardi’s oldest son received a life-altering diagnosis: Huntington’s disease.
A neurodegenerative genetic disorder, Huntington’s affects muscle coordination, causes psychiatric problems, and ultimately leads to death.
“The brain is basically being killed off slowly. It’s a slow, progressive, horrible way to go,” Billardi said of the disease, which typically becomes noticeable in mid-adult life—if at all.
It’s that last part, among other things, that Billardi is working to fix.
“My son said, ‘Mom, find my people,’ and I said, ‘OK,’ and it grew from there,” she said.
“There’s a lot of frustration in our community right now because people are getting diagnosed because we don’t have enough resources,” she said. “And it’s such a devastating diagnosis that physicians are less likely to diagnose someone with HD because the suicide rate is so high.”
On July 19, Billardi’s all-volunteer nonprofit group Help4HD International will hold a symposium on Huntington’s disease for medical professionals at the historic Santa Maria Inn in Santa Maria.
According to Help4HD’s website, because the gene affected by Huntington’s is dominant, every child of an individual with the disease has a 50 percent chance of inheriting the mutated gene. More than 30,000 Americans have been diagnosed with Huntington’s and more than 250,000 others are at risk.
As part of its mission to help educate the medical professionals who care for patients with Huntington’s and their families, the nonprofit has partnered with Dignity Health and the Santa Barbara County Consortium for CME to provide specialty continuing medical educational credits in exchange for participating in symposium activities.
The event will feature experts from UC Davis, UC Irvine, Stanford University, and the California Institute for Regenerative Medicine, focusing on such issues as diagnosis and treatment for the disease and ongoing research.
“We’ll be marching out after this. Our goal is to create chapters and support groups and to open a clinic specializing in Huntington’s and Parkinson’s [disease] and other movement disorders,” Billardi said.
People interested in registering for the symposium can contact Billardi at 441-5618 or Melissa@help4HD-international.org. There will be limited registration available the day of the event, which starts at 8:30 a.m.
More information, including links to Billardi’s radio show and additional resources, can be found at help4hd-international.org.