PMMNG Home

November News Items

We've got a few news items to pass along:

  1. Health Tree – HealthTree is a patient-led community effort where myeloma patients own their data and merge it into a collective network with other myeloma patients. As patients enter their data into the HealthTree platform, the system educates them on personally relevant treatment options and clinical trials  they can discuss with their doctors. Over time, the collective data of many patients provides more context for patient / doctor collaboration.  See the video below to learn more about Health Tree!

https://youtu.be/v7V8-dfQ7bM

  1. The PROMISE Study – All myeloma patients wonder if their family members might be at risk for developing the illness as well.  Now, there is a way for the first-degree relatives of any myeloma patient to help answer this question. These relatives can be parents, siblings or children of myeloma patients.  Dr. Irene Ghobrial from Dana Farber Cancer Center shares the new PROMISE study, the biggest myeloma screening study ever run to help prevent the blood cancer from occurring by catching it at an early stage. The PROMISE study is supported by a $10M Stand Up 2 Cancer award. The study will include patients over the age of 45 with family members of MGUS, smoldering myeloma, multiple myeloma or Waldenstrom’s patients and African American patients, who are 3 times as likely to develop multiple myeloma.  Joining the study is easy. You are mailed a kit which you take to a lab and the lab takes care of sending the samples to the researchers. What can we learn from the study of 50,000 people who are likely to be at risk for early myeloma conditions and their family members? Perhaps how to cure myeloma before it begins. Follow this link to learn more.

https://www.myelomacrowd.org/promise-study-2/

  1. Inclement weather notice – With the upcoming winter season, it is important to review our practice regarding the cancellation of meetings due to weather.
    1. If inclement weather is occurring, we will decide whether to cancel a scheduled meeting by 10 AM on the meeting day.
    2. We will send out an email to the group detailing the cancellation and will post the cancellation on our website.
    3. If any member is not clear about whether to come to a meeting due to the weather, feel free to check with either Marilyn Alexander ( 215-694-4146) or Maddie Hunter (732-261-3929).

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