Huntington’s Disease, a fatal genetic disorder that causes a progressive breakdown of nerve cells in the brain, doesn’t get the attention that Parkinson’s Disease and ALS receive. Then again, those diseases have/had famous spokespeople such as Michael J. Fox for Parkinson’s and Pete Frates, whose Ice Bucket Challenge swept the country and raised millions, for ALS.
However, Huntington’s Disease does have one somewhat known celebrity, though “not many remember Woody Guthrie,” Michael Miller, an advocate for the disease and also a board member of the Massachusetts/Rhode Island Huntington’s Disease Society of America Chapter, joked.
Of course, a disease with no cure that deteriorates a person’s physical and mental abilities during their prime working years is nothing to laugh about. But Miller’s comment does underscore how much a high-profile endorsement means to one’s cause (in this case, both Fox and Frates have/had the disease they are/were fighting to eradicate).
According to the Huntington’s Disease Society of America (HDSA), symptoms usually appear between the ages of 30 and 50 and worsen over a 10 - 25 year period. Ultimately, the weakened individual succumbs to pneumonia, heart failure or other complications.
HDSA notes “everyone has the gene that causes Huntington’s Disease, but only those that inherit the expansion of the gene will develop (the disease) and perhaps pass it on to each of their children. Every person who inherits the expanded (Huntington’s Disease) gene will eventually develop the disease.”
For Miller, a Tewksbury resident, the disease hit close to home when doctor’s diagnosed his sister Debbie Rotberg. He believes the expanded gene came from their father. She passed away a few years ago. Miller also noted his cousin suffered from the disease and also passed away.
Miller became a strong advocate ever since then. In order to help raise funds to find a cure and also help people with the disease who require round the clock assistance, he’s teamed up with other Tewksbury residents to participate in a virtual walk.
Known as the Tewksbury Virtual Team Hope Walk, it begins on Saturday, Sept. 12 in a new virtualized format. Miller said normally walkers would gather and walk around the grounds of Tewksbury State Hospital, which is home to many people suffering from Huntington’s Disease.
Currently, three teams have registered for the Tewksbury walk: Team Debbie, which includes Miller, Team Tewksbury HD and Drossos Dreams. The total goal for Tewksbury is $46,000. As of this week, the members raised $4,534.
In the time of COVID-19, charities are hit hardest as people simply have less money to give.
“It’s difficult to fundraise due to the economy and coronavirus,” Miller admitted, adding his team does expect an additional $3,000 to arrive from one of their sponsors.
Thankfully, while the walk takes place on Sept. 12, the fundraising deadline extends until the end of the year. This gives Team Hope four more months to hit their $46,000 goal. Last year, Miller said the team broke records.
Besides the money, the Tewksbury resident said the walk is a way to advocate and raise awareness and attention for the disease. While there isn’t a cure yet, there’s hope and Miller said some drugs do work for certain symptoms like shaking and memory loss.
Miller said no one in his family knew anyone had the disease until doctors diagnosed his sister. Even then, her original diagnosis came back as anxiety and depression. Eventually, a doctor diagnosed the real problem. Fortunately, even though Miler’s father most likely passed down the gene, he tested negative.
Thankfully, doctors have come a long way, even in the past decade, with treating the disease and finding a cure. Miller said scientists are now attempting to turn off the gene that causes the disease or stop it from repeating.
He said he’s been very into the research and has “lots of hope” this could be the last generation to suffer from this debilitating disease. He mentioned both mouse and human trials have gone forward.
This will be Miller’s third walk, though the first one he’ll complete alone. There’s no specific distance or amount of time someone needs to walk, only that they do it. Normally, with the walk, Miller said the HDSA holds a silent auction. This year, he suggested they may hold an online auction instead.
According to the team’s website http://mass.hdsa.org/about/2020-tewksbury-team-hope-walk, all local companies and small businesses are invited to sponsor.
“We depend on the generosity of sponsors, and by sponsoring a walk your company will be supporting a great cause as well as engaging in an exciting marketing opportunity within the local community.”
Anyone interested in sponsoring Tewksbury’s Team Hope walk should email email@example.com. You can also visit Miller’s personal page at https://app.donorview.com/FundRaiser/CampaignInfo?prm=tqITQp5N0w3BYK94HwsDgB1WosiCtMQprdkQ_yrGx2fJMJ-MHmXx2ZGQ8DNYz-ID95O7AnDE0R-1zUQD0mvQFQ_NKHNEzi1X7SqAthLR9N-aVRZ8dzDEYQ3KfowbZwZRURxonXXf2XEGDct9-byaO5bgHIJwaKeSuC1ey9veXO6Jgu9DitYxsEUgNeGTemr9nGl5i_zb-fjjPXrgGTkxmG_crHFC80Uuej0MTCSlqAHrw8UgBZiWNKq8xG-r9zZi0 to donate, as well. He has a personal goal of $5,000.