Our next monthly PMMNG meeting will be Saturday November 13, 2021 from 1:30-3:00 PM ET. Due to the coronavirus pandemic, this meeting with be conducted by Zoom.
This month we will be fortunate to again welcome Christina Bach, our group's clinical oncology social worker, to present on the Financial and Insurance aspects of our myeloma journey. Christina is also Oncolink’s Psychosocial Content Editor and is an instructor and field liaison at the University of Pennsylvania School of Social Policy and Practice.
As you also may know, Christina is an expert on health insurance for cancer patients so bring your questions for our discussion.To prepare for the meeting and to help you organize your questions, please take a few minutes to review the webinars that Christina and her team have prepared in her role at Oncolink. Go to oncolink.org/insurance to look at the Health Insurance Education Series. There are short films on all types of Medicare plans so the whole series is worth viewing as a refresh. Each year there are changes, so being updated can help you to figure out your best option during this open enrollment season.
All members will receive the Zoom link in an email message. For new members, contact either Maddie Hunter at [email protected] or Marilyn Alexander at [email protected] to arrange for the Zoom link.
We look forward to seeing you on Zoom!
Note: During the meeting Maddie mentioned two Mt. Sinai studies examining covid vaccine responses among multiple myeloma patients. We also discussed the Cancer Support Community's Cancer Experience Registry survey. Articles for the two Mt. Sinai studies and a flyer for the Cancer Support Community survey are attached below.
The Philadelphia Multiple Myeloma Networking Group (PMMNG) will have a special virtual (via Zoom) meeting from 1:30-3:00 PM ET on Saturday January 29, 2022. The purpose of the meeting is to help educate members about opportunities for sharing their health data.
Several organizations have recently started efforts to pool patient data in the hope that clinical and genomic information from a large set of patients can help researchers, clinicians and patients make smarter treatment decisions, and help in finding a cure for multiple myeloma.
Mary DeRome, head of patient education for the Multiple Myeloma Research Foundation (MMRF), and Jenny Ahlstrom, founder of Myeloma Crowd and Healthtree, will speak about their groups' efforts in this area. While there are some similarities between the MMRF and Healthtree data sharing approaches, there are also some important differences. Our hope is that this special PMMNG meeting will help our members in deciding whether sharing their data is "right" for them.