Researchers and patients mingle together

| Michael Tuohy

Saturday: Day 2 at #ASH16 started with an early morning breakfast meeting with the International Myeloma Working Group (IMWG). The room was packed with myeloma experts from all over the world, welcoming in 17 new members, reviewing 2016 papers and most importantly deciding on the topics of their next projects. I was happy to see that our friend, Dr. Craig Cole, was one of the new members of the IMWG. Congratulations, as I’m sure he’ll be a valuable member to this prestigious group!

We also attended an Education Program on the use of antibodies, vaccines, and checkpoint inhibitors in myeloma. All were reviews and updates on these new therapies, as well as treatments to keep an eye on for future options.

My favorite part of the day, and perhaps even all of ASH, was the IMF’s Media & Grant Award Reception. 

The first half of the program is always inspirational with patients sharing their stories on novel therapies. 

The first speaker came to us via video message. Hardy Jones has spent his career championing and giving voice to dolphins, whales, and ocean life throughout the world. We are grateful that he also dedicates his talents and passions to championing and giving voice to our myeloma community.

Pat Harwood is a longtime friend that I was thrilled to see doing well and sharing her story. Pat is leader of the Twin Cities Myeloma Support Group in Minneapolis-St Paul, MN. She has been a wonderful advocate and fundraiser for our cause for many years, and while she has attended ASH with the IMF before, this was her first time as a speaker. Pat shared her 20 year experience as a patient and her current treatment on Darzalex®. Go Pat!

Pat Harwood speaks at #ASH16.

Pat Harwood speaks at #ASH16.

Brian Strickler is a fairly new member of our myeloma community. I had the pleasure of having dinner with Brian and his wonderful wife, Margot. I got to know him and his journey better.  We’re about the same age so it was interesting to share what’s happening in the myeloma world now, compared to when I was diagnosed 16 years ago. Brian spoke passionately about his diagnosis and good response on the FDA-approved treatment of ixazomib, Revlimid®, and dex.  I remember being at ASH last year when this was a special session presentation and all the excitement it generated. To now meet a patient doing well on this treatment is just fantastic.

The final speaker of the evening was my buddy Yelak Biru. Yelak’s a long survivor of myeloma and well respected within our community. Yelak has become more involved in patient advocacy and education related to myeloma research and treatment. He has taken on a newer objective to help patients internationally have access to novel therapies and is on the IMF’s Global Myeloma Action Network (GMAN) committee. Yelak talked about his decision with his doctors, to switch from Velcade®, which was working very well, to ixazomib which is an easy oral treatment. We’re happy to see that his philosophy of “Knowledge is Power” and his collaboration with doctors is keeping him going on a great oral therapy with ease.

The second half of the program is the perfect segue from patients sharing experiences to researchers receiving grant awards from the IMF to continue their good work. The IMF has been giving out Junior and Senior Grant Awards since 1995. The grants are awarded annually to promote research into all areas of myeloma in an effort to improve patient outcomes. To date, the IMF has funded more than 100 of the most promising projects by both senior and junior investigators in the field of myeloma.

This year, the IMF gave out three senior grant awards and five junior grant awards. I was happy to have the opportunity to talk with a few of the grant recipients. 

Felipe Prosper, MD, of the University of Navarra, Pamplona, Spain, received a senior grant award for his project on “Deciphering the role of eRNAs in the pathogenesis of multiple myeloma.” From what I understand, this is a novel and unexplored mechanism that can regulate the expression of genes, and therefore regulate the fate of a cell. Sounds really interesting and I’ll follow this research closely!

I also spoke with Geoffrey Matthews, PhD from Boston, MA. He received second year of funding for a junior grant award. His project is entitled, “Treating myeloma through inducing degradation of BET bromodomain proteins.” In layman terms, his data suggests that new agents, known as dBET, have strong anti-tumor effects in myeloma and act by not only reducing the activity of their target protein, but also causing its complete degradation within the tumor cell. The aim is to better understand how dBET causes the death of myeloma cells and whether these new agents can override resistance of myeloma cells to other agents. Really exciting stuff! Since he lives in Boston, I’ll be sure to keep in touch with Geoffrey and his great research project (and maybe catch a Red Sox game, lol.)

Michael Tuohy with Geoffrey Matthews, PhD

Michael Tuohy with Geoffrey Matthews, PhD

To end the evening we were able to rub shoulders with all the researchers, myeloma experts, and IMF staff. I was happy to see our very special friend, Dr. Robert Kyle and spent some time catching up with him.

Dr. Robert A. Kyle (left) with Robin & Michael Tuohy

Dr. Robert A. Kyle (left) with Robin & Michael Tuohy

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Jack Aiello

Diagnosed with myeloma in 1995, Jack is strong proponent of patients participating in clinical trials so that, in the future, myeloma and other cancers will be known as curable diseases. He is a proud facilitator of the San Francisco Bay Area Myeloma Support Group.

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