May Is Huntington Disease Awareness Month
Judy Harding
May 29, 2017
Judy (right) pictured above with son, Paul (left).
In February 2016, Judy Harding’s son, Paul, died of Huntington disease (HD). He was just 38. Paul inherited the fatal neurological disease from his father.
For more than a decade, he struggled with alcoholism and the gradual loss of muscle control and for a short period, he struggled with schizophrenic symptoms as well. But for Judy, the very worst came at the end.
“My hardest thing with Paul was the last four months of his life,” she recalls. “His eyes didn’t twinkle and he couldn’t smile. That was the hardest four months of it all, because he always smiled.”
Tragically, Paul was not the first child she had to bury. In 2010, her daughter Vicki also died from HD, after a long struggle with her own alcoholism, anxiety and psychosis.
As a registered nurse, Judy knew how to advocate to make sure her children got the care they needed. However, even in the medical world, she has encountered doctors who lack basic information about the disease. “We still have educational work to do, plain and simple,” she says.
Judy has been in the thick of that work since 1999, when she joined her local chapter of the Huntington Society of Canada (HSC). Since then, she has worked tirelessly to raise funds and awareness for the HD cause.
Left to right: Paul, Judy and Vicki.
Although there’s plenty more to be done, Judy points to significant achievements. Today, families in the area have better access to social workers, while advances in research give her hope that treatments will be developed in time to help her two at-risk grandsons. “HSC is making a difference, the researchers are making a difference. We’re going to get it,” she says with confidence.
In March, Judy gave up her post as HSC’s Niagara chapter president when she moved to Belleville, Ontario to be closer to family. She leaves behind big shoes to fill, as well as a chapter quick to heap on the praise. Judy shrugs off the compliments. For her, it boils down to maternal instincts. “They all think I’m a saint,” she says. “But I’m just a mother.”
The month of May carries a particular significance because it’s Huntington Disease Awareness Month. During this time, volunteers are hard at work raising awareness about Huntington disease, a rare genetic disorder that causes brain cells to die. A person with HD becomes less able to control movements, recall events, make decisions and control emotions. The disease leads to incapacitation and, eventually, death.
“It is the dedication and support of people like Judy that are the fabric of the Huntington Society. Volunteers who go above and beyond help us grow, achieve impactful results and reach our goals,” says Bev Heim-Myers, Chief Executive Officer of the Huntington Society of Canada. “We are incredibly fortunate for people like Judy and the thousands of volunteers who stand beside us and make us the best that we can be.”
Click here to see everything we’re doing to celebrate Huntington Disease Awareness Month.