For me, Saturday, December 6th at the 56th American Society of Hematology (ASH) Annual Meeting had three highlights:
· The IMF’s International Myeloma Working Group (IMWG) breakfast working session;
· The ASH Ham-Wasserman lecture; and
· The IMF Brian D. Novis Senior and Junior Research Grant Awards Ceremony
The IMWG has over 160 members from all over the globe with 15 new members who joined in 2014. Its mission is to “identify, support, and implement the most promising research to prevent onset of active disease, improve treatment, and find a cure for myeloma.” How does it do that? By focusing on research and consensus statement guideline development. To date, it has published over 40 research papers with 31 first authors and collaborated on many global research initiatives. Just in the last year it has published 6 research papers, offering guidelines on issues including risk stratification, global myeloma care, diagnostic criteria and the role of MRI in myeloma. What impressed me most was the professional respect among the doctors and their willingness to collaborate.
The Ham-Wasserman Lecture, part of the official ASH program, named after two prominent hematologists, is reserved for a distinguished hematologist who contributed extensively to the field of hematology and the advancement of the ASH principles. This year’s distinguished speaker was Dr. Jesús San Miguel from the University of Navarra, Pamplona, Spain. His talk was excellent and understandable even for a non-hematologist. Among other things, he touched on:
· The complexity of myeloma and its clonal heterogeneity
· The expanding pool of myeloma drugs
· The role of CT-PET
He concluded with this cartoon stating that myeloma patients, families, pharmaceutical companies and doctors are all on the same team.
The final event was the most exciting and included the awarding of the IMF’s Brian D. Novis Senior and Junior research grants. This is significant for two reasons:
- it allows these scientists to start/finish the research in a specific academic area related to myeloma. But, most importantly,
- it will entice the researchers to fall in love with myeloma and perhaps dedicate their career going forward to the treatment of myeloma patients.
In order to humanize the experience for the researchers and the supporting pharmaceutical companies, four patients and advocates told their personal stories. One was diagnosed at the young age of 25 and has done well without a transplant. Another has been a firefighter all his life and after living with MGUS for close to 1.5 decades is now on one of the drugs in clinical trials. A third patient has had multiple transplants and failed many old and novel drug therapies until he got on a trial that put him in remission for the first time. Yet another has dedicated her myeloma life to teaching others.
That first patient, diagnosed at age 25, was ME. My journey has been one of journeys. From Ethiopia to the US and back again. From studying Geology to Computer Science. From a scared, young, 25-year-old patient to “older,” well informed myeloma survivor of almost two decades who never had a transplant. Telling my life journey at the reception to help put a face to myeloma was exhilarating, especially for an introvert like me. When I meet the researchers who won the grants again 10 to 15 years from now, I hope they are working on something unrelated to myeloma because they no longer need to, because of the breakthroughs my story has inspired and that the grants have helped achieve.
Sharing the Hope!
Yelak from the North Texas Myeloma Support Group!