Donna
York lost her father to Amyotrophic Lateral Sclerosis (ALS
or Lou Gehrig's Disease), a progressive disease that attacks the
nervous system, but does not impact intellectual capabilities. She started HARK
in memory of her father.
Living
with ALS is devastating in many ways, not the least of which is financial, York
said. She started HARK to help patients and their families with the financial
issues that can arise. Though vans are quite expensive, many families stretch
to buy them because they don’t want to be prisoners in their homes, she said. But,
they can’t recoup the costs when the van is no longer needed.
She
envisioned a program where HARK would buy a van for a family, and when that
family no longer needs it, the van will return to HARK to go to another family.
“Everybody is different. You never know how long you have,” she said. “A van
could go to four or five families over the course of ten years.”
She
connected with Anthony Carbajal, a young man with ALS who has become a
prominent advocate. Together, they decided to organize the fundraising campaign,
with a goal of raising $30,000 for a gently used van. The campaign began on
Giving Tuesday and is scheduled to end on New Year’s Day. The intent is that
the “Hopemobile for pALS” initiative will be an annual event.
John
and Linda Gregoire of Windham were married in 1981. After 26 years of “normal”
family life, including raising two sons and all the youth activities, camping,
fishing and backpacking trips that go along with that, their world was turned
upside down. The Gregoires received devastating news when John was diagnosed
with ALS in 2007.
An
expert told John he would live a year to 18 months from the time of the
diagnosis, but the family refused to accept that prognosis. John has long
outlived the doctor’s expectations. “We lived like we didn’t believe him, and
that has helped,” said John’s wife, Linda.
After
the diagnosis, the family went to work. They have spent countless hours on
advocacy and raising awareness for ALS, including starting a foundation called
the Hope-JG Foundation (www.hope-jg.org). A visit to the Steve Sailing ALS/MS
Residence in Chelsea, MA inspired a vision of establishing a similar residence
here in Maine, so that people with advanced ALS won’t need to leave the state
to get the care they require.
