July Volunteers of the Month
Mary Lou and Phil Lee

In 1995, Edie Weinholtz was referred to a neurologist and given a script that read “pseudobulbar palsy.” She was subsequently diagnosed with ALS, and her dear friend Mary Lou vividly remembers going to a library to decode the mystifying medical jargon and research the disease. As she pored over books and articles, a librarian approached her to ask, “Did you find what you wanted?” Mary Lou replied, “No, but I found what I was looking for.”


 Mary Lou and Phil met Edie and her husband, Bill, in the ‘70s through the Hatboro Horsham Welcome Wagon Club. The couples had been close friends for nearly twenty years when Edie was diagnosed with ALS. They had enjoyed a trip to Hawaii together in 1994 and then almost immediately after Edie began experiencing symptoms of the disease.


 In January of 1995, Edie underwent surgery. Directly afterwards, she told Mary Lou with difficulty that she was losing her ability to speak. “I tried to reassure her, and I told her that it was probably just the anesthesia,” said Mary Lou, “but, of course, it wasn’t.” Mary Lou and Phil did everything that they could to help Bill care for Edie as her ALS progressed, but in 1997 the disease took her life.


 Since losing Edie, Mary Lou and Phil have become incredibly involved with The ALS Association Greater Philadelphia Chapter. When Edie was still alive, the two couples volunteered together and attended Chapter meetings. They even joined Edie in Washington for advocacy in the mid-1990s. From the beginning, Mary Lou and Phil saw firsthand the benefits that the Chapter could provide for their friend. In the last 20 years, they have been amazed by the progress they have seen in the technology and care available for people with ALS. That progress encourages them to continue to volunteer at events.


 They attended the first Ocean City Board…Walk to Defeat ALS® in 2001 and still have the shirts from their first team, Edie's Earthshine, in 2002. They are appreciative and proud of their team's commitment to the walks over the years. Since then, they have volunteered at the Walk to Defeat ALS in Ocean City, Hershey, Lehigh Valley and Lakewood. Mary Lou loves the enthusiasm and positivity of the participants at each Walk despite the gravity and severity of the disease. “Everybody is happy, everybody is smiling,” she remarked.


 Phil and Mary Lou are also Community Ambassadors, attending many events, such as the Mushroom Festival, to work at information tables. They also help in the office with mailings and other important projects, but Phil joked with a smile that his favorite part of volunteering is stuffing chocolate for the Hot Chocolate event in the spring. Mary Lou and Phil love connecting with people who have ALS at events, and seeing familiar faces over the years inspires them. This year, they noted all of the activity at Hershey Medical Center and the energy from the volunteers from BAYADA Home Health Care, who also had a table at that walk.


 “I’m more motivated today than I was twenty years ago thanks to all of the progress I have witnessed,” said Phil. He remembered how difficult it was to be a caregiver back in the mid ‘90s, and how much has improved since then. Mary Lou and Phil empathize deeply with other caregivers and patients and their desire to help has only increased. Everyone in the local ALS community looks forward to seeing their familiar faces at future events and thanks them for their passion and dedication.


 
 

The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002
215-643-5434

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.