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Multiple Myeloma Research Foundation Does Important Work. Too Bad It Is Obscured By The Group’s "Over The Top" Aggressive Fundraising Style

Home/Multiple Myeloma Research Foundation Does Important Work. Too Bad It Is Obscured By The Group’s "Over The Top" Aggressive Fundraising Style

Multiple Myeloma Research Foundation Does Important Work. Too Bad It Is Obscured By The Group’s "Over The Top" Aggressive Fundraising Style

Today I will be exploring the Multiple Myeloma Reasearch Foundation’s (MMRF) role as a fundraiser. How focused, targeted, efficient and transparent is the MMRF?

Here is how the MMRF describes it’s mission on the MMRF Website:

The MMRF relentlessly pursues innovative means that accelerate the development of next-generation multiple myeloma treatments to extend the lives of patients and lead to a cure.

The first thing I notice as I navigate the MMRF’s site is the use of the word, “powerful.” The MMRF doesn’t just have a mission statement—their’s is a “powerful mission.”

The MMRF doesn’t just collaborate with their own Multiple Myeloma Research Consortium (MMRC), they have a “powerful collaboration.”

OK. Right away I’m suspicious. What—the MMRF isn’t going to collaborate with their own research arm, the MMRC? And why does there need to be a MMRC anyway?

But wait—it gets worse! Check out this news release, featured on page one:

Multiple Myeloma Research Consortium (MMRC) Helps to Advance Clinical Development of Carfilzomib

Give me a break! I believe the MMRF and MMRC do good work. I know they helped fund early research on what is now carfilzomib. But I become suspicious when such dramatic superlatives are used.
Is that really necessary? Sure it is—if your ultimate goal is to raise more money.

Nothing wrong with that. But the focus of this series is to try and find a better, more efficient way to use research funds. If groups like the MMRF and IMF (more about the IMF tomorrow) are constantly competing for donations, isn’t that expensive? Fund raising costs? Duplication of staff and research?

In November, 2009, I wrote a five part series comparing and contrasting the MMRF’s Genomics Initiative with the IMF supported Bank on a Cure. Here are links to those articles:

More About Genetics & Bank On A Cure Multiple Myeloma Research Project

Today’s Genetic Coincidence

Multiple Myeloma Genomics Initiative VS Bank On A Cure

More Comparing & Contrasting “Bank On A Cure” and “Multiple Myeloma Genomcs Initiative”

News From ASH: Comparing & Contrasting “Bank On A Cure” With The Newer “Genomics Initiative”

Yes, there are distinct differences between the two genetic mapping projects. But there are also many similarities and overlaps. Couldn’t/shouldn’t these two groups be working together? Or does competition between groups like the MMRF and the IMF create faster results?

As you will learn tomorrow, the IMF is less research oriented than the MMRF. The IMF focuses on patient education and political action goals aimed at saving patients money and improving care.

Tuesday, I heard from regular reader and fellow multiple myeloma patient and blogger, Nick from California, in response to Tuesday’s kick-off article of this ongoing series, What Is The Best Way To Conduct Multiple Myeloma Research? Here is Nick’s comment:

This is one of the things that the MMRC does extremely well — getting companies and different doctors to share patient data and work together in clinical trials. That’s certainly part of the solution.

It’s an interesting topic and quite a headscratcher. I look forward to your examination of it! Meanwhile, I give to Arkansas to support their work towards a cure, and I give to the MMRF to support the work of everybody else. 🙂

It is hard to argue with Nick’s approach. We should all pause and thank donors like Nick for helping fund multiple myeloma research! But I am getting ahead of myself. Tomorrow: The International Myeloma Foundation

Feel good and keep smiling! Pat