As most of you know, the great patient advocate Mike Katz passed away in April of this year. One of his many important roles has been leading the IMF's support of an online peer-to-peer community for myeloma patients. Mike founded our online patient community in 1995 and led it for nearly 20 years when it was an email-based system as part of the Association of Cancer Online Resources (ACOR). He led its transition to the Smart Patients web-based platform in early 2014 and worked closely with the Smart Patients team until his passing.
For those who don't already know, Smart Patients is an online community where patients and caregivers affected by complex illness learn from each other about treatments, challenges, and how it all fits into the context of their experience. Collectively, our experience is a vast and often untapped resource. Together, we can become more expert in our conditions and receive better care as a result.
Mike also served as the connection between Smart Patients and the IMF. The IMF has been discussing with Smart Patients how to proceed and they have asked me to take on a leadership role here. No one can replace Mike and I won't pretend to. I will be able to help guide the patient community, given my experience living with myeloma for the last two decades after being diagnosed at the age of 25, and leading the North Texas Myeloma Support group for several years. I will also serve as a formal liaison between Smart Patients and the IMF, and we'll be exploring how Smart Patients can tap into the IMF's expertise when appropriate. For example, Dr. Brian Durie, IMF Chairman and Co-founder, has agreed to periodically answer scientific questions raised in the online community. I'll also work closely with the Smart Patients team as Mike did, to help guide conversations when I can be helpful and keep us "on track.” As always, this will continue to be a true community effort. If you or your loved one is a myeloma patient, please join us at http://www.smartpatients.com/imf.
-- Yelak Biru --