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February 2024 Volunteer of the Month: Robin Steiner

Robin Steiner’s mother loved the beach. The warm sand, cool water, and sun along the horizon soothed her and made her feel at peace with the world.

In the years leading up to her official ALS diagnosis in 2012, Robin’s mother experienced ongoing weakness in her legs. This weakness was difficult to explain away and continued to persist and bother her. Muscle weakness can mean so many things, so Robin and her family had no reason to assume it was connected to any other serious issue. She had heard about ALS from a coworker but had not experienced it personally.

In October 2012, Robin’s mother was diagnosed with ALS. In addition to the muscle weakness, she was beginning to slur her words when speaking. Her symptoms continued to accelerate. Now Robin and her family have united to do all that they could to ease her mom’s pain and provide her with comfort and peace.

Robin brought her mother to an ALS Treatment Center in Philadelphia. There she and her sister connected with the care team at ALS United Mid-Atlantic, including nurse Gail Houseman, RN, CNS-BC. In addition to learning about the many programs available to her through ALS United Mid-Atlantic, Gail introduced Robin to the Joan Dancy and PALS Foundation in New Jersey, where she met social worker Kathy Valentino and nurse Pat Schaeffer, who were lifelines to Robin’s family throughout her mom’s battle with ALS.

That battle was faster than Robin had expected as her mother passed away in December 2013. The care professionals that she met along the way did all that they could to make sure that Robin and her family had the tools they needed to manage the disease. That December was hard, but she knew that her mom was at peace, just as she was every day that she could spend on the beach.

The kindness that she received during that journey inspired Robin to seek out opportunities to volunteer a few years later. She contacted Gail Houseman and learned about the Visiting Volunteer program. Unfortunately, just as she was about to volunteer, the COVID-19 pandemic changed everything, and her efforts had to be put on hold. That long pause reinforced the reality that time is precious, and she knew she would be ready when the time came to help.

In 2021, Robin was able to officially become a Visiting Volunteer with ALS United Mid-Atlantic. Gail connected her with a woman living with ALS who receives care and support from her daughter. It was like a perfect match to Robin’s experience.

Robin quickly formed a bond with her new friend with ALS and her daughter. She goes food shopping, does household chores and laundry, and sits for coffee visits to bring some peace and normalcy to their lives. Just as the beach brought peace and relaxation to her own mother, Robin works to bring that same warmth as a Visiting Volunteer.

“Robin is a caring friend to our ALS families and we appreciate her kindness in everything she does,” said ALS United Mid-Atlantic nurse Gail Houseman.

In addition to her time as a Visiting Volunteer, Robin and her family participate in the ALS Walks in Seaside Heights, NJ, and Ocean City, NJ, where they connect with other families, raise money for the ALS cause, and help in every way possible. Those walks along the beach are another happy reminder of time spent with her mom.

“It is very difficult to see the effects of this awful disease, but I would encourage anyone who would like to give back to volunteer,” said Robin. “It is very rewarding.”

Today, Robin remains a trusted, caring, and valued Visiting Volunteer. She eases the burdens of ALS and serves as a source of kindness and friendship. Robin understands the realities of ALS far too well, but, thankfully, she also understands the power of compassion in a time of need.

Thank you, Robin, for all that you do as a volunteer to provide peace and warmth to all those living with ALS. We are grateful for the time you give and the example that you offer to all of us at ALS United Mid-Atlantic.

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