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June 2024 Volunteers of the Month: Marc and Lori Schefsky

Volunteering restored Marc Schefsky’s faith in humanity.

In late 2021, Marc Schefsky began to feel a twitch in his left elbow and weakness in his legs. After a career as a hotel manager and a life full of golf, Marc was used to being on his feet all day, so he was determined to do whatever he could to strengthen his legs. As he reflects on it now, he was doing all the wrong things to improve his physical health at the time.

Instead of using the cart while golfing, Marc started to walk the course. He took laps around his house to stretch and he even attached weights to his ankles to help build strength. Nothing was working and he saw no improvement in his mobility. His friends asked him about a strange limp. Finally, in early 2022, Dr. Zachary Simmons diagnosed Marc with ALS during a visit at the Penn State Health Hershey Medical Center ALS Treatment Center.

Even after months of symptoms, the diagnosis was a tremendous shock to both Marc and Lori. They had heard of Lou Gehrig’s Disease and Marc was even in his local newspaper in 2014 for the Ice Bucket Challenge, but he had no personal connection and had not given the disease much thought or concern. Those first weeks were overwhelming and stressful, but he credits the ALS United Mid-Atlantic care team and the care professionals at the ALS Treatment Center at Penn State Hershey for easing his stress. “We weren’t sure how all the pieces fit together,” said Marc. “Now we can’t imagine this journey without our care team.”

Prior to his diagnosis, Marc was extremely active in his community, including as a volunteer for many causes, as a school board member, and as a golfer. ALS was not going to change that. Instead, his diagnosis only changed the purpose of his activism.

Marc loves Halloween and dressed up as a werewolf while volunteering to support children in his community.

Marc’s outgoing personality and ability to create friendships with new people helped him be a success in business as a hotel manager. It is that lively personality that his wife Lori loves and nurtures. Together, they love to host friends and family, especially with their over the top Halloween parties. Marc scaled a 10-story building dressed as a werewolf to raise money for the Williamsport Education Foundation.

ALS has taken a lot from Marc since his first symptoms, but one of the toughest pills to swallow was losing the ability to play golf. Marc was a golf professional. One of his first outings for ALS awareness was using his golf story to bring attention to the realities of ALS in the local media. Recently, Marc’s friend took him to the golf course for his birthday so that he could visit with the other league players. It was very difficult for Marc, but he once again felt like he was where he belonged.

As a volunteer, Marc wants everyone to feel like they belong. He uses his story to inspire and motivate others. In 2023, Marc and Lori spoke at the Roger Kirk ALS Golf Outing. It was the perfect spot for them as Marc and Lori talked about his love for the game and how ALS gave him a new kind of drive.

That speaking opportunity also led to Marc and Lori becoming the keynote speakers at the 2023 ALS United Mid-Atlantic Annual Celebration. Together, they shared how ALS impacted their lives and why it was so important for others to donate, advocate, and volunteer for the ALS cause.

Since his diagnosis, Marc has found power in sharing his experience and Lori has been right by his side. They have proven to be effective advocates, meeting with state legislators in Harrisburg, PA, and recently in Washington, DC, where Marc and Lori met with Congressman Glenn Thompson and Congressman Dan Meuser, who was so inspired by their story that his office gave them a tour of the U.S. Capitol. Through advocacy, Marc and Lori hope to increase funding for ALS care and research towards new ALS treatments.

Marc has found that his story is powerful in many other ways. He spoke to the students at Williamsport Area High School after they finished reading Tuesdays with Morrie and he took questions to help them better understand life with ALS. Marc’s daughters had attended the school and he had served on the school board, so many of the students knew him, which meant that his testimony made a significant impression on them.

The community has rallied around Marc. Using their experience planning big parties, Marc and Lori have organized events to raise money and awareness for ALS programs. With just two weeks to plan, they put together a successful event with over 300 guests that included a video from John Driscoll Hopkins of the Zac Brown Band, live music, and a major raffle. Altogether, the event raised over $10,000, with guests telling Marc that they learned a lot about ALS and wanted to continue to be involved.

Volunteering is emotional for Marc. He wants people to see and feel that emotion. From advocacy to awareness to fundraising, instead of sugar coating the realities of ALS, his goal is to make sure everyone is motivated to join him to take action. People regularly reach out to ask more questions and share their support. In the end, being a volunteer is a selfless act for Marc, who knows that the real results will benefit others.

Thankfully, Marc is never alone in his fight against ALS. In addition to the support from Lori, he has two daughters who have joined him in many ways. Lauren graduated from Ohio State University and works for the US Dept of Commerce as a Critical Minerals Specialist. Marc was able to dance with Lauren at her wedding in November, 2023. Katie is a student at Penn State University and has an upcoming wedding in September, 2024. As Marc continues to advocate for the ALS cause, his daughters are always on his mind. They know that their dad is inspiring people every day.

Thank you, Marc and Lori, for inspiring and motivating all of us at ALS United Mid-Atlantic. Your dedication and outgoing attitude bring others into the ALS cause and build our network to ensure that others can access quality care programs. Together, we will end ALS.

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