I had attended a number of IMF Patient & Family seminars where I heard about multiple myeloma support groups in cities around the US. In 1997, several years after my BMT, my twin sister Sharon Klein and I decided to form a
support group in our area, Philadelphia.
We obtained a “how to get started” packet from the IMF and began contacting people we knew of with myeloma in Philadelphia and surrounding areas. Together with Barbara and Phil Falkowitz, Arnold and Nory Block, and a few others, we gathered to explore forming our group – where the group would meet, how often, what we could accomplish, and how to reach out to others with myeloma.
We met in each others’ homes but as they were very spread out, we began to look for a centrally located meeting space. I visited many facilities in search of the right one. Many times I was told there was not enough space. Then we contacted the Wellness Center, a non-profit facility geared specifically to cancer patients. The Center offered a variety of services: speakers, nutritionists, etc. They allowed us to meet there with a trained facilitator and announced our support group in their newsletter which has a large mailing.
We began with about 10 members, meeting every other month for one and a half hours but soon realized that monthly meetings would be more beneficial. As word spread that the group existed, we grew by leaps and bounds. The group soon moved to the facility’s largest room. Currently, up to 40 people attend each meeting with approximately 60 members on our mailing list. As our membership continues to increase, we are now considering smaller break-out groups on special topics during part of our meeting time. We are looking for solutions that still allow for meaningful discussions and wonder how other large groups are meeting the challenge of expansion.
The support group members are committed to offering support and information, while sharing and caring for each other. And we continue to look for ways to reach out to all of the myeloma community – the group is now trying to initiate an outreach effort in Philadelphia’s African American community.
As our needs are different and talents diverse, many members have found a variety of ways to assist the group. Brad High keeps us informed through the group’s newsletter, Debbie Exner is our line to information on new treatments and medical advances, and I look for ways to do fundraising for the IMF. We all have talents that make our group as successful as it is and we thank
the IMF for their guidance.
Editor’s Note: Marilyn Alexander spearheaded the “Cooking for a Cure” fundraising project, compiling recipes from myeloma patients, their families and friends.
She is now developing a new version of the cookbook. Please help her make this important project a success by submitting your favorite recipes.
For information on the Philadelphia Multiple Myeloma Networking Group, please contact Barbara and Phil Falkowitz at
(215) 752-8207 or email: G67vette@aol.com