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Sharing data key to innovative MMRF research initiative

Home/Inspirational, News, Research/Sharing data key to innovative MMRF research initiative

Sharing data key to innovative MMRF research initiative

“I’m going to shame them into coming on-board.”  Exclaimed Kathy Giusti, Founder and Chief Executive Officer of the Multiple Myeloma Research Foundation (MMRF) and Multiple Myeloma Research Consortium.  A memorable quote from a last minute, eye opening visit I made to the MMRF offices in Connecticut last week.

kathyI had never expected to be sitting in Kathy’s corner office, our animated conversation interrupted periodically by calls from Forbes Magazine and staffers from CNBC’s Morning Joe program, making final arrangements for her appearance on the show today.

I had been invited to Norwalk, Connecticut to preview the simultaneous launch of several bold, new MMRF initiatives by Kathy Giusti’s right hand, Anne Quinn Young.  “Face-to-face would be best.”  Anne had told me over the phone.  “We would love to be able to walk you through the CoMMunity Gateway.”  She wrote excitedly in a follow-up email. 

I had met Anne earlier this spring, and interviewed her on a Cure Talk Radio broadcast a few months back.  I knew she wouldn’t insist on me flying-up if it wasn’t a really big deal; I was more than happy to agree to a meeting.

But I didn’t expect to be spending a half an hour alone with Kathy on a busy Friday.  And I hadn’t expected to be blown-away by all that the MMRF was trying to do.

So much, in fact, that I had trouble sorting through it all.  I spent a jam-packed six hours meeting with everyone from Research Director, Daniel Auclair, to Chief Operating Officer, Walter Capone and Patient Outreach Coordinator, Sara Tyghter, trying to quickly get up to speed on a number of different program initiatives:  The Multiple Myeloma Genomics Initiative (MMGI), an ambitious and collaborative clinical trial program known as CoMMpass, the MMRF Researcher Portal and the new and exciting MMRF Community Gateway.

Too much, too fast!  I was trying to understand a highly technical, integrated effort that had taken a lot of really smart people years–and millions of dollars–to create.  Yet a short way into my whirlwind introduction, I had a life changing epiphany.  Seriously, it was like someone turned-on the lights in the middle of the night.

In the midst of the organized chaos, one thing became crystal clear.  The MMRF was working on “myeloma time!”

Loyal readers will recognize this short phrase I coined a few years back.  It describes the way I live; not wanting to waste a minute of finite, precious time.

Led by example–Kathy Giusti’s stubborn dedication to finding a cure–both leadership and staff at the MMRF gets it!  Some of our myeloma brothers and sisters are dying, others barely holding on.  There isn’t a moment to waste!

As morning passed, I became both hopeful and inspired.  Unfortunately, I also began to realize how difficult it is for the MMRF to get their message out.  This isn’t 30 second sound byte stuff.  The MMRF is working on a half dozen technicaly different, disparate  initiatives.  Kathy, her staff and Board of Directors get it.  But I don’t think many in the myeloma community do.  The general public certainly won’t.

As a writer, it is my goal to try and communicate key ideas simply and clearly.  I’ve been wrestling with how to do it with such complicated, multifaceted material.  In a nutshell, here’s what I learned on my visit:

MMRF logo*  The MMRF staff is focused on results and outcomes, not PR and hype.  This may surprise those of you that–like me before my visit–thought of the MMRF as a fundraising arm for myeloma research.  Instead, the MMRF works to facilitate research, focusing resources in areas where they can do the most good.

*  The MMRF/MMRC are striving for open access.  Remember the quote from Kathy back in the first paragraph of my post?  “I’m going to shame them into coming on-board.”  She was referring to MMRF efforts to get cancer research centers, drug companies and Universities to share data openly and freely in the public domain.  Open access means researchers spend less time duplicating their efforts.

*  Clinical trials.  The MMRF works closely with drug companies to help start, fund and complete trials.  I didn’t realize that the MMRF was an invaluable partner in bringing all six FDA approved myeloma drugs to market over the past ten years.

*  The MMRF is an unabashed champion of individualized medicine.  Using the term “precision medicine,” the MMRF has a laser-like focus on genomics and ways to match-up patients with the most advantageous therapies.

*  Taking things one step farther, the MMRF plans to start mobilizing the myeloma community online.  The goal: to accelerate precision approaches and eventually a cure!

That’s a lot of technical material to cover!  And then there’s the human side of the MMRF, my interview with Kathy Giusti and the stories of the people that have dedicated themselves to helping us live longer, better lives.

I have written a lot about the International Myeloma Foundation’s (IMF) Black Swan Initiative, and how helpful the IMF to me and thousands of other myeloma patients.   And as I mentioned before, I will admit that I have neglected the MMRF, pigeon-holing the group as a fundraising machine.  I think it’s time to grant the MMRF’s important work equal time.

Watch for regular MMRF updates here at MMB, starting tomorrow.  I slept a lot better the last few nights, knowing that the MMRF’s talented and hard working staff are maintaining a laser-like focus on finding a cure.

As Anne said right before I headed off to the Westchester, New York airport for my flight home, “We aren’t satisfied with helping find the next, better IMiD or proteasome inhibitor!”  Music to my ears!  There has got to be a better way–and the MMRF is oh, so close to finding it.

Feel good and keep smiling!  Pat