Progress in fight against Huntington’s disease links NJ families
Fear of disclosing your illness. Fear of passing it to your children. Families suffering in silence.
This is the horror of Huntington's Disease, which is fatal and has no cure. The genetic disorder attacks nerve cells in the brain, progressively leading to a breakdown of mental and physical acuity.
But the New Jersey chapter of the nonprofit Huntington's Disease Society of America is banking on hope, even as it adjusts its operations to accommodate COVID-19 restrictions.
"We're getting closer and closer to a cure every day, and there are some really promising drugs that are coming up in the pipeline, so we're very excited about that too," Stacey Waterman, chapter co-president, said.
Waterman is one of the 30,000 Americans currently known to suffer from Huntington's, although she has mild symptoms. Her mother, however, died from the disease, and Waterman said because there is a 50/50 chance of a carrier passing it to their children, it changes the way you plan out your life.
Yet she and co-president Ned Cancelmo say a diagnosis should not change the way a person actually lives life.
Sometimes, Cancelmo said, those at risk don't even want to know they have the disease. Waterman's mother, for instance, told people until her death that she had multiple sclerosis. But as it commonly hits in the prime of adulthood, it can be devastating to navigate without some kind of support.
That is what makes an event like the New Jersey chapter's annual Hope Walk so crucial: It provides an opportunity for those with the disease and their families to congregate, and in many cases reunite, in a judgment-free environment.
This year, the Hope Walk/Run is virtual, and spread over a month's time from Sept. 1 to Oct. 2, to maximize the number of people who can be involved.
Cancelmo said making sure the event still happened, even in the face of a pandemic, was a way to keep families engaged and involved in the organization and its mission, especially at a time when fundraising has been put on the back burner.
"We believe strongly in the community part of it," he said. "We do a lot of education days to brief everybody on what's going on in the drug world and what's happening with clinical trials. And a lot is happening. We're really grateful for that."
For more on how the Hope Walk/Run is working this month, go to the New Jersey chapter's website.