BUCKHANNON – A newly formed nonprofit organization hopes to bridge the gap in knowledge about amyotrophic lateral sclerosis and other life-altering neurological disorders.
The SETH Project, a recently created nonprofit organization, aims to increase public awareness of ALS, sometimes called motor neuron disease, and other neuromuscular disorders. They also plan to raise funds to support people and organizations that work with PALS or People with ALS.
Named for its founder Seth Poling, a Buckhannon native who received the diagnosis of ALS in 2017 after having suffered from symptoms since 2014, the SETH Project’s mission is to facilitate real-life experience working with PALS for health care providers.
The nonprofit’s president and Seth’s sister, Brittany Alden, explained why that’s so critical.
“We all take for granted the ease with which we are able to perform basic functions such as having our teeth cleaned, or how we would work with a physical therapist,” she said. “Our goal is to help providers have a better understanding of issues PALS — people with ALS – face, which in turn helps PALS have a better experience in these situations.”
Alden described Seth’s vision, which soon became the nonprofit’s mission, as two-fold.
“He wants to be able to offer scholarships to students who would make a difference locally where ALS does not have a lot of resources locally and then to further that same goal, Seth would like to donate – to share what we’ve raised – with different nonprofits on an annual basis, whether it’s I Am ALS or the Steve Gleason Project,” she said, “so we want to offer scholarships to students who are pursuing a degree or advanced studies in a field that typically treats someone with ALS. Maybe it’s the medical field or occupational therapy or different disciplines that would come in contact with a PAL.”
Ultimately, SETH Project board members hope those efforts encourage more health care providers who are knowledgeable about ALS and other neuromuscular diseases to practice in West Virginia.
“My brother has had a lot of community support, but he’s also lived through a lot of different experiences that he doesn’t think everyday people would see as a challenge to PALS,” Alden said. “For example, he went to have his teeth cleaned after his disease had started to progress and the hygienist had never dealt with a PAL before – a person with ALS, that’s what they refer to themselves as – and she basically drowned my brother because swallowing is a challenge.”
That harrowing experience catapulted Seth into thinking about other aspects of everyday life that are challenging for PALS. Still able to communicate via text message with the assistance of an eye-gaze machine, Seth texted Alden and some of his classmates who had stayed in touch with him about the idea for a foundation that would make life a little less challenging for PALS.
Several of the people he contacted were his Buckhannon-Upshur High School classmates. Despite residing in Morgantown with his wife, Erika, and two young boys, Seth’s connections to the Buckhannon-Upshur community remain intact, Alden noted.
“He has a lot of strong feelings and connections tied still to the Buckhannon community, so he thought that maybe he could influence some of his classmates, friends and family to support a project that could fundraise, spread awareness and offer scholarships,” Alden said.
One of those classmates is Jeff Sandy, a physical therapist at HealthWorks in Buckhannon who soon became the SETH Project’s treasurer. Sandy has known Seth since middle school or earlier.
“We went through school all together, graduated together, played sports together,” Sandy said. “I’ve known Seth for a long time. When he was diagnosed, I think we found out that a lot of people didn’t know much about ALS. The ice bucket challenge that was popular a couple years ago, that was the first time a lot of people had ever heard of ALS, let alone really knew what it was or what it meant for somebody. Once you provide people with that knowledge, they are much more likely to donate or become involved.”
Sandy said the SETH Project wants to fill in that knowledge gap by reaching out to local colleges and universities to encourage them to allow PALS to come in and serve as patients to give students first-hand experience working with people with ALS and other neuromuscular and neurological disorders.
“They can be patients to help the students learn, but then it also can be helpful to the patient because they would get free treatment as well, whether it’s stretching programs or something else,” Sandy said. “But then I also see where we can be a resource for people in terms of assistance with equipment and changes to their housing. A lot of times people with ALS, if they have a two-story home, they’re going to quickly become isolated to the first floor, so how do you adapt your home to that situation? Not only necessarily financial, but knowledge as well – where do they find that information? Who can help? What organizations do help?”
“We want to be a bridge between the public and what is available, and then we’re hoping to expand what is available,” he added.
The SETH Project is an acronym that stands for Strength, Endurance, Triumph and Hardship – specifically, that with strength and endurance, “you can Triumph over Hardship by adapting and overcoming adversity,” according to its website.
Seth himself has often posted on social media that he might have ALS, but ALS “doesn’t have him.” Alden said her brother’s determination has carried him further than most on his ALS journey. He’s already outlived the life expectancy of a PALS.
“The thing with Seth is, he’s always been very competitive, and I really think that’s what’s driven him from diagnosis to the point he’s at now,” Alden said. “He’s competitive to the point that he wants to beat it even though there is no cure. He’s kept his sense of humor and been really positive in the face of something that’s a death sentence, really.”
Alden said the group hopes to host a Tough Mudder event in the future.
“It was Seth’s idea,” she said, “and honestly, I really think he’d like to do one.”
Other logistics to be worked out in 2022 and beyond include what nonprofits the SETH Project plans to support and the recruitment of additional volunteers.
“We want more people to have a better knowledge of ALS and other neurological disorders,” Alden said. “Really, what it comes down to is empathy. It’s also education and getting more people involved locally.”
Sandy, the group’s treasurer, said donations of any size will be accepted and appreciated.
“We take donations of any size,” he said. “We don’t put limits on that.”
Sandy and any SETH Project board member can accept cash and check payments as donations, either in person or via U.S. mail. Checks should be made to the SETH Project and mailed to 2047 Brushy Fork Road, Buckhannon, WV 26201 or dropped off to Sandy at HealthWorks in Buckhannon. In addition to Alden and Sandy, board members include Kimberly Cabrera (secretary) and Lauren Lamb (public relations).
To stay up-to-date on how to help, follow the SETH Project on Facebook or visit its website to donate.