By Cameron Morsberger
Sheila and Dan Kieran have been married for 33 years, but over the last decade, Sheila said she had noticed Dan occasionally make some “little quirky movements.”
Once the pandemic was over, she told Dan he would need to get a full work-up at the doctor. But after Dan had a few falls and ended up in the emergency room, testing revealed he had Huntington’s disease, a fatal, genetic neurological disorder “described as Parkinson’s, ALS ,Alzheimer’s and dementia” combined, said Eric St. Onge, a local social worker.
Since his diagnosis in June 2020 — only two months after he retired from his 42-year career at General Electric in Lynn — Dan has fought hard, but there is no cure for Huntington’s. That’s why the Kierans are working to raise more awareness around the condition and its impact.
They’ll do just that at the upcoming Lowell/Tewksbury Team Hope Walk run by the Huntington’s Disease Society of America’s Massachusetts and Rhode Island chapter, on Oct. 22. The walk, which takes place at the Lowell Heritage State Park and starts at 10 a.m., will fundraise for the disease and support the approximately 41,000 symptomatic Americans currently living with it.
The Kierans are “Dan’s HD Destroyers,” a fundraising team through the walk that raised around $22,000 in 2020, their first walk, making them the top fundraisers. They reached $10,000 last year, which is also their goal this year in their first in-person walk.
Their experience with the program has been “phenomenal,” Sheila said, and it’s given Dan “a fantastic attitude.”
“Being involved with this HD little community and people, it’s meant so much to our family, for all the love and support that we’re getting, and especially to my husband,” she said. “It’s given him a purpose to help the kids and the grandkids and future generations so that we can eradicate this disease.”
St. Onge, who serves on the HDSA’s Massachusetts and Rhode Island chapter, has worked in the Huntington’s unit at both LowellHealthcare and Healthcare Center and Tewksbury Hospital. He said he’s witnessed the effects of this “devastating disease” on both an individual and familial level, he said, the latter of which is hugely consequential.
“The family aspect of it is very important, because it is a very hereditary disease, so it affects family systems,” St. Onge said. “Even if you’re not at risk, your family generally has quite a bit of exposure to the illness itself.”
People born with the particular Huntington’s gene, which has a repeat, will experience a progressive deterioration of several different brain functions over the span of two to three decades, St. Onge said. Typical onset is around 35 to 55 years old.
Sheila Kieran said her husband’s diagnosis was “a shock,” because they had no family history of the illness and no relatives have shown any symptoms. None of their shared five children wish to be tested.
Virginia Goolkasian, the Northeast Regional Development Officer at HDSA, said funds from the walk support local HD families through social workers, support group leaders, and educational programming. Any excess proceeds are pooled together with Chapter and event proceeds from across the country and support national initiatives like HDSA’s Center of Excellence network and Research programs. The MA/RI Chapter is proud to have two such HDSA Centers of Excellence - Massachusetts General Hospital and Beth Israel Deaconess Medical Center.
Goolkasian said she’s excited to walk along the “scenic” Merrimack River and bring together many people touched by this illness. There will also also be a Halloween pet costume contest, as well as an emcee and free parking, she added.
Dan’s son, Brendan Kieran, of Tewksbury, said the Team Hope Walk “has been a big, positive motivator in our lives.” He and his family have also advocated on the state level for Huntington’s Disease Parity Act legislation
, which would waive the five-month waiting period for disability benefits and two-year period for Medicare.
For people who have to leave their jobs due to their HD, this would be huge, Brendan said.
“We’re hoping that this will be the year so that HD families don’t have to wait any longer for this important relief,” he said.
Sheila said they’ve met countless families also impacted by Huntington’s and are looking forward to a day of joy and hope.
“(Dan) always says the first one that’s going to beat it will be him,” she said with a laugh. “The walks are a great way to get out there, spread awareness, meet new people, connect to the HD community.”