Honoring the Promise of Care and Support

The ALS Association Greater Philadelphia Chapter started with a promise to ALS families to provide help and hope along every stage in the ALS journey. That promise has taken many forms in the 40 years since Felice Wiener started the Chapter in 1977 and it continues to this day. Each board member, sponsor, donor and volunteer found their own way to add their talents, their ideas, and their compassion to the Chapter. Ben and Dottie Ohrenstein made a promise early in the Chapter history, and their work continues to leave a lasting impact.

When the Chapter first began, there was no extensive patient services program. The first step to growing the Chapter and learning about what needs families had was to create a forum for people with ALS and their caregivers to share, to listen, and to be supported.

Early in the 1980’s, Ben and Dottie were at a wedding when they noticed that Dottie’s cousin Paul Lazar speech was slurred. From there, they learned that he had bulbar onset ALS. Paul’s brother Ed, who lived in the Philadelphia area, wanted a more active presence for ALS families. He hosted a meeting with ALS patients and caregivers in his home in Wynnewood, PA and asked Ben and Dottie to attend.

Dottie and Ben at an event early in the Chapter’s history.

Ben remembers that first meeting very well. He made a lot of connections from the start and was moved by their stories and experiences. In 1981, Dottie and Ben agreed to host monthly Chapter meetings at their home. After the monthly meeting ended, they had a “Support Group” that broke down into key sections:

A. ALS patients and caregivers together

B. Intermission

C. Caregivers and patient separated

Ben ran the section for caregivers and Dottie, herself a trained social worker, ran the meeting for patients. Thus the first official Chapter Support Group of about 20 people was born in the Ohrenstein’s home.

During those early meetings in his home, Ben emphasized the importance of caregivers taking care of themselves so that they would have the strength and ability to care for their loved ones. It is a message that helped shape the Chapter’s early mission that continues to this day — to care for all aspects of ALS.

Paul Lazar took on the role of Chapter President at this time. Dodo (Dorothea) Behr succeeded him as President, but when her husband Ted was transferred out of the country, she had to step aside from the position. That is when Ellyn Phillips assumed the responsibilities for the Chapter. In 1984, ALS took the life of her husband Alan. Ellyn learned a great deal from seeing Alan’s fight personally, but she also learned from Ben and Dottie, Paul and Dodo, and all of the other ALS families that she had met.

Ben with Morton Charlestein at an early ALS event. The Ohrensteins and Charlesteins played significant roles in advancing the Chapter and the Resource Groups for ALS families.

Those early meetings continued at the Ohrenstein house and then moved to Ellyn’s home in Philadelphia, followed by meetings at the home of Ellyn’s parents Morton and Malvina Charlestein in Narberth, PA. In 1988, the Chapter hired its first paid staff member and eventually secured its first official office space in Ellyn’s family’s business, Premier Dental Products, in Norristown, PA. The promise of those first Support Groups has been honored every year from those humble beginnings. The early meetings were in houses, but a lesson continues to shape the Chapter today, that every person with ALS has a home here with The ALS Association.

Today, 40 years after the Greater Philadelphia Chapter was founded, the Chapter continues to advance the mission which was exemplified by these early meetings. Resource Groups, as they are now known, are more extensive and inclusive than ever before, but they still follow the example that Ben and Dottie helped set from the beginning.

In 1981, there was one support group for people with ALS through the Philadelphia Chapter. Today there are 12 groups in the tri-state area of Pennsylvania, New Jersey, and Delaware and 222 people regularly attended these groups last year. Ed Lazar said that he wanted more local support for his brother and for other ALS families. Now the Chapter reaches out to see where a group is needed and how they can be useful for facilitating care and hope.

People affected by ALS gathering for a Resource Group in 2016

The patient services professionals at The ALS Association continue advancing the mission of The Greater Philadelphia Chapter through many innovations in the resource group program. People with ALS now attend specialized group sessions, including some that are focused on caregiver support, caregivers of patients who are vented, issues on dementia, and bereavement. The Chapter also explores more ways to bring people together with online groups, telephonic groups, and they are held at various times and locations for convenience and to make people comfortable.

Today, Alair Altiero, Ph.D., is the Resource Group Coordinator for the Chapter. She says “The groups are about the connection, of normalizing and not feeling alone in what often time seems like a solitary struggle.”

Click here for a special podcast with Alair Altiero about today’s ALS Resource Group program and how the groups have evolved over the years.

Ben, Dottie, Ed, Ellyn and others recognized that struggle nearly 40 years ago when the first groups were formed. Since then, The Chapter has grown to new levels to help thousands of ALS families over the years. The original promise remains at the core of the success of these groups. They continue to define the character of the Chapter and the purpose of the mission, to make sure that nobody with ALS ever has to feel alone and, by working together, everyone can provide better care while creating a community based on hope, understanding, and love.