Our Meetings

pmmng logoOur January meeting will feature two speakers from the International Myeloma Foundation

Ray Wezik, Director, Public Policy and Advocacy, will talk about “Advocacy and You.” The objectives of his talk are:

 *   What is advocacy?
 *   What is my role?
 *   Learn the basics of how government works; including how laws and policy are made
 *   What are the IMF’s legislative priorities?
 *   How does advocacy impact those legislative priorities?
 *   Develop basic skills for effective advocacy

NOTE: Robin's talk (below) was postponed until September.

Robin Tuohy, Senior Director Support Groups, will update us on Black Swan, the IMF's effort to find a cure for multiple myeloma. Recent efforts in the Black Swan initiative have included:

  • MRD testing - development of a "very sensitive, reliable, standardized, and affordable test" for minimal residual disease in multiple myekloma
  • iStopMM® - "first large-scale screening study aimed at preventing myeloma before it develops," being trialed in Iceland
  • The ASCENT trial - "us[ing] a combination of carfilzomib + lenalidomide + dexamethasone + daratumumab with/without stem cell transplant in an attempt to cure patients with high-risk smoldering multiple myeloma (SMM)."
Attachments:

Tentative list of upcoming PMMNG meeting program topics and speakers:

2018

  • January 13: Black Swan Initiative, Robin Tuohy, IMF and Patient Advocacy, Kelley Jones, IMF
  • February 10: American Society of Hematology (ASH) 2017 Update, Dr. Dan Vogl from UPenn Abramson Cancer  Center      
  • March 10: Drug Interactions (Speaker TBD)
  • April 14: Patient / Family Split
  • May 12: Palliative Care 101  (Speaker TBD)
  • June 9: Takeda, Celgene, or Janssen Nurse Educator  (Speaker TBD)
  • July 14: Open Meeting
  • August 11: No meeting, summer break
  • September 8: Lab Results, Colleen Erb, Nurse Practioner from UPenn Abramson Cancer Center
  • October 13: Patient / Family Split
  • November 10: Medical Insurance, Christina Bach, LSW
  • December 8: End of Year Celebration


General Meeting Information

WHEN: Second Saturday of Every Month (excepting August)
TIME: 1:30 – 3:30 PM
WHERE: RALSTON HOUSE, 3615 Chestnut Street, Philadelphia, PA (Near Univ. of Pennsylvania Campus). There is free parking behind Ralston House off of Ludlow Street.

pmmng meeting