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PMMNG Members Discuss Myeloma for StoryCorps and Blood Counts

Maddie & Cindy at StoryCorpsAs part of Amgen’s efforts to raise awareness about multiple myeloma through its Blood Counts program, Cindy Chmielewski and Maddie Hunter were recorded having a discussion at the StoryCorps pop-up studio in Federal Plaza, NYC on May 8, 2018.  This 40-minute conversation focused on many elements of their journeys with Myeloma including their original feelings about being diagnosed, their coping strategies, the powerful role of the support group in their lives and how Myeloma taught them about vulnerability and being open to uncertainty.  Cindy and Maddie were emotional at times but couldn’t resist a good laugh at an overactive GPS getting in on the conversation.

Cindy and Maddie's conversation is available at: https://drive.google.com/file/d/1O0HkXlX9ONFMrR9jJN6uAyaspqCA5c6p/view?usp=sharing.

And a month later, on June 6, Mike Burns talked with his friend of 40+ years, Ed Hansch in the StoryCorps booth. Their conversation included information about Mike's journey with multiple myeloma, but focused on what Ed's friendship and support through that journey has meant to Mike.

Mike and Ed's conversation is available at: https://drive.google.com/open?id=1eXbCSHwBILqLnWrzgVs7DRiuzrtqKG-9

 

PMMNG Members

The Philadelphia Multiple Myeloma Networking Group’s (PMMNG) mission is to be an ongoing resource for myeloma patients, their families and friends.

PMMNG Vision

Provide hope to the Myeloma community through education, companionship, compassion, and advocacy while working toward a cure.

PMMNG Mission

  • Enrich the lives of patients and their families through programs and resources for living with and conquering myeloma
  • Foster connections and dialogue among members at all stages of the myeloma journey
  • Open pathways for patients seeking treatment by building and sustaining relationships with area medical centers, national myeloma organizations and pharmaceutical companies.
  • Provide support for organizations advancing research and financial assistance for myeloma treatment
  • Advocate for research and legislation regarding effective treatment and quality of life

Who We Are

The PMMNG was formed in 1995, and is a diverse group of myeloma patients, their caregivers and support persons.

From an original meeting around a kitchen table, the founding members led the organization to find more appropriate meeting space, an experienced group facilitator and many more members.

Phil Falkowitz and his wife, Barbara, along with Marilyn Alexander and her twin sister, Sharon, mobilized efforts to include patient education, political advocacy and fundraising for Myeloma research. Meeting notices spread throughout the Philadelphia region and relationships with local cancer organizations were established.

In 1999, the growing group found its current home at the Ralston House. The membership list grew to upwards of 300 members. At present, the PMMNG is affiliated with the International Myeloma Foundation (IMF). The PMMNG is led by a Steering Committee and is known in the region as a safe haven for families dealing with myeloma.

Certainly we wish there were no need for a group such as ours, but we take comfort from the fact that we have been able to reach and assist so many more people than the small group who met more than 20 years ago.

Group Facilitators

Maddie Hunter: maddie@hunterunlimited.com or 732-549-7981
Marilyn Alexander: malex19115@comcast.net or 215-694-4146 

Direct Contact

PMMNG: pmmng1@gmail.com

Medical Advisors

Dr. Edward Stadtmauer and Dr. Dan Vogl,
Abramson Cancer Center, University of Pennsylvania