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.