August 2019 Volunteer of the Month

Kathleen Edler


Kathleen Elder, our September Volunteer of the Month, will never forget the difficult physical and emotional challenges that occurred during her beloved mother’s journey with ALS. Her experience as a former caregiver inspires the friendship and understanding she now shares as a Visiting Volunteer.

How the Journey Began
When Kathleen’s mother, Shirley, began to have trouble walking, many wrote it off as typical aging. But, after Kathleen and her brother researched the symptoms of ALS, they were afraid this disease would eventually become the conclusive diagnosis.

Kathleen remembers the emotional struggle of living with such a foreboding suspicion. It was hard to accept that a once physically active, health-conscious, woman who walked five miles every day suddenly couldn’t walk by herself anymore.

The diagnostic process was perhaps as hard as receiving confirmation that ALS was at the root of Shirley's failing health. Yet, throughout the process Kathleen did not shy away from asking tough questions. She refused to give up and or accept easy answers.

Thankfully, Kathleen also had The ALS Association Greater Philadephia Chapter’s Social Worker in North Central Pennsylvania, Mary Beth Tomzcak, a compassionate and experienced ALS advocate, working beside her family. “Mary Beth was our angel. She was there for us every step of the way. She’ll say she didn’t do much for us, especially since Mom only lived with ALS for a few months after her official diagnosis, but Mary Beth pointed us in the right direction, answered questions, and made a hard situation easier. She set us up with the equipment loaner program and told us about resources we would need as the disease progressed.”

Visiting Volunteers Build Community and Connection
In the months that Shirley battled ALS, Kathleen’s family worked around the clock to provide care. It was hard, but there was a great network of support. It’s almost unfathomable to think how difficult it could be without such strong support. Then, in a conversation with Mary Beth, Kathleen learned that the Chapter can help to nurture those who are more isolated, as well as build community and connection, through its Visiting Volunteer Program.

The thought of becoming a Visiting Volunteer piqued Kathleen’s interest and she filed it away to re-visit at a later date. After Shirley passed away in 2016, it wasn’t long before Kathleen felt ready to lighten the burden for others living with ALS.

Now an experienced Visiting Volunteer, the role comes so naturally to Kathleen because she remembers the many acts of kindness and caring by friends and family that brought joy to her mother. Kathleen says she feels so rewarded by being able to share so many meaningful moments with those she visits. The Chapter also feels blessed. Thank you Kathleen for the patience, caring, and understanding you help to spread. 


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

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