Amyotrophic lateral sclerosis (ALS) may have robbed Rick Marks of his ability to speak, but it will never steal his indomitable spirit or courage.
Marks, of Winchester, is in the midst of a 600-mile walk through four states along a portion of the Appalachian Trial. Marks started his trek at Mount Greylock in Adams on June 17, and expects to finish in about six weeks, at Mount Katadhin in Maine.
Marks has already surpassed by more than $10,000 his original goal of raising $50,000 for ALS research, and he is now shooting for $75,000 in contributions to ALSONE.org, to help find a cure for the affliction, which is also known as Lou Gehrig's Disease.
"There is currently no treatment or cure for ALS, but there is a lot of new, promising research and clinical trials," wrote Marks, on a blog tracking his hike. "ALS ONE is partnering with Mass General Hospital, UMass Memorial, ALSTDI, and Compassionate Care ALS to find a treatment or cure by 2020 and support people living with ALS now."
A father of two who has worked at Bank of America since 1993, Marks, 55, was diagnosed with ALS last October in what he described as a "terrible shock."
An experienced hiker who has climbed most of the high peaks in New England and done some backpacking with the Boy Scouts in New Mexico, Rick decided to make a trip on the Appalachian Trial to raise money and awareness.
"I don’t want one more family to have to go through what we are experiencing, and what so many others have before us," wrote Marks. "I want to do something to make a difference and to contribute to ending this horrific disease while I still can."
In order to undertake such an effort, Marks needed assistance, primarily from his wife, Eileen, and close friends like Ted Kellogg and Didier Collin de Casaubon and his son Matthieu, fellow Winchester residents who volunteered to join Marks on the early legs of his epic hike.
Early on, it became apparent that Rick was unable to carry a heavy pack along the trail. Kellogg, who accompanied Marks on the first few legs of the journey, literally had to do much of the heavy lifting while Marks went to a lighter pack. It was also clear early on that Marks would require two traveling companions, and not just one, during the hike, and that Rick needed occasional rest days. On Day 7, they were joined by Didier and Matthieu.
Later in the hike, Rick will be joined by fellow Winchester residents Josh Reynolds, Steve Delaney and Walter Scully.
There have been other complications, like insects and poor weather that required Eileen Marks to drive up to re-supply the hikers with bug repellent, clean clothes and the like.
There have been mostly encouraging moments, though. On the third day on the trail, Rick and Ted met a group which bestowed them with nicknames, which is a tradition among hikers: "Steady" for Marks, and "Wombat" for Kellogg. Didier would later come to be known as "Otter."
The trio accomplished their first 10-mile hike last Wednesday, The going is a little slower than Marks expected. As his disease advances, simpler tasks become more difficult.
"One of the things that is really affected by ALS is swallowing," said Eileen Marks, in a telephone interview. "It takes him a lot longer to eat, and obviously with what he's undertaking he needs to eat to keep up his strength and stamina."
According to Eileen, Rick's ALS has progressed rapidly. The life expectancy after diagnosis is 2-5 years, but there are some encouraging signs on the horizon. ALS awareness has increased greatly over the past three years, since the diagnosis of former Boston College baseball player and Beverly native Pete Frates kicked off the "Ice Bucket Challenge" effort which raised more than $100 million for ALS research.
"It's a complicated disease," said Eileen. "It's not incurable. But (until the Ice Bucket Challenge) it has been underfunded."
There was a breakthrough earlier this year when the Food & Drug Administration approved the use of the drug Radicava, also known as Edaravone and Radicut, an intravenous medication which has been used to treat the effects of stroke and ALS in Japan.
"It's not a cure, but it may be able to slow the effects of ALS," said Eileen. "It's all very new, and may affect people differently."
Rick's journey is expected to last through early August. He has been given time off, with pay, from Bank of America, which Eileen notes has been fully supportive of Rick's efforts.
"They've been nothing short of phenomenal," said Eileen. "They've assigned a human resources representative to take care of Rick's needs. He couldn't be doing any of this without the support we've gotten from Bank of America."
Meanwhile, "Steady," "Wombat," "Otter" and the others will continue their trek along the Appalachian Trial, hoping to continue to raise awareness and funds to someday cure ALS. For more information, or to donate to Rick's cause, please visit rickshikeforals.org.