Tom Libby knows how to follow clues. For 32 years, Tom was a federal investigator with the United States Department of Defense. When he retired in 2016, he planned to enjoy life with his wife, Caroline, with a focus on golf, home projects, and walks with his dog Lucas. In the winter of 2020, Tom began to discover clues that something was wrong with his health.
Tom’s first symptom of ALS was weakness in his right hand. He was experiencing trouble with holding a pen or eating with a fork. At the time, he justified the difficulties as arthritis. Over the next few weeks, he started to discover more clues about his body with weakness in the quadricep muscles in both legs.
When Tom took his dog Lucas for a walk in the spring, he stopped to talk with a neighbor and Lucas became agitated when he spotted another dog coming towards them on the street. Tom tried to restrain him, but his legs gave out. That is when the clues all came together, and he realized that there was something more serious happening.
Tom consulted with an orthopedic doctor who suspected he had a lower vertebrae issue that was causing weakness in his legs. After months of spinal injections and even back surgery, Tom still had leg weakness. The doctor recommended that Tom visit a neurologist, which led to an EMG test that indicated a neuro-muscular disorder. In January 2022, Tom Libby was diagnosed with ALS by Dr. Mary Sedarous at the Hackensack Meridian Jersey Shore University ALS Treatment Center.
Following his diagnosis, Tom’s clues, or symptoms, continued to progress. He began to lose the ability to walk, and his speech became slow and slurred. Caroline would sometimes notice the clues before Tom did. They sold their home in Avon-by-the-Sea in New Jersey and purchased a ranch home in Neptune, NJ. Even at a ranch home, they still had to make modifications, highlighting the daily difficulties for people with ALS.
As soon as she delivered the ALS diagnosis, Dr. Sedarous encouraged Tom to connect with ALS United Mid-Atlantic. She also notified him about the different support groups that were available for him. The treatment center team tracks his physical and emotional status and recommends ways to handle his changing symptoms.
“ALS United Mid-Atlantic has been extremely helpful by providing me with financial support for medical equipment as well as emotional support by letting me know they are always behind me if I need anything,” said Tom Libby. “I could not have selected a better doctor for my needs than Dr. Sedarous.”
When Tom was first diagnosed, he spent the first six months investigating everything he could about the disease. He became an expert. Tom decided that he had the power to make a difference, if not just for him, then for others impacted by the disease and those who would be diagnosed in the future.
Tom has become a top advocate with ALS United Mid-Atlantic. In 2024, Tom visited Washington, DC, to meet with members of Congress from New Jersey to stress the importance of funding ALS research. In 2025, Tom met with New Jersey Assemblywoman Margie Donlon to encourage her and others to support funding ALS care programs.
In addition to advocacy, Tom represented ALS United Mid-Atlantic by throwing out the first pitch on Lou Gehrig Day for the Jersey Shore BlueClaws baseball team. The event raised money and awareness for the ALS cause.
Tom also shares his stories and experiences in regular Zoom groups with other patients, caregivers, and medical professionals. They discuss ALS issues in the news and provide each other with emotional support. He also donates to other ALS events in the area and is always ready to advocate in any way he can.
Tom believes that knowledge is power. That is what made him a successful investigator. One thing he knows he would never have to question is the love and support from his family. Caroline is his daily caregiver, and she helps around the house and with other daily living tasks. She even takes up those home repairs that Tom promised to do when he retired. Battling ALS has only made their bond stronger and made Tom appreciate everything that his wife does to make their home and family strong.
Tom’s immediate family continues to support him by taking him to lunch and activities and offering their love in every way they can.
ALS United Mid-Atlantic is proud to recognize Tom as the March 2025 Volunteer of the Month. He continues to use his power as a person living with ALS to make life better for others. When we improve care for those living with ALS and fund successful new treatments, it will be with the help of advocates like Tom Libby.