Yesterday I shared my feelings about the Multiple Myeloma Research Foundation (MMRF). It is unfortunate that their great work is sometimes overshadowed by hyperbole—by the group’s culture of aggressive fundraising and self promotion.
Today let’s examine the other major player in the multiple myeloma sand box: The International Myeloma Foundation (IMF).
The IMF’s site is less “over the top.” But there is a prominent “Donate!” box, located in the lower left corner of their Website.
The IMF features a different mix of services and goals than the MMRF. The IMF is far more patient centered, offering a wealth of information—from help finding clinical studies to one on one telephone counseling for newly diagnosed patients.
The group’s archives hold hundreds of video clips which outline research study results and therapy options.
The IMF is also politically active. Patient advocacy initiatives are focused and effective. They are based on five principles which apply to all cancer patients:
1.Prevention is the key to reducing the burden of cancer (including myeloma)
2.Continuing innovation is critical to early diagnosis and better treatment
3.Equality of access to care is imperative
4.Early approval of new treatments for deadly cancers is essential
5.Patients who have exhausted approved therapies need simplified access to experimental agents whenever possible
Additionally, the IMF also actively promotes patient and caregiver support groups. While the group does sponsor and provide grants for a number of different researchers and their projects, the IMF is far more active in helping develop policy and treatment guidelines than funding research.
So far so good. But the IMF is far from perfect. Like the MMRF, I couldn’t find a way to access the group’s annual financial statements online. Staff and travel expenses are high—but there is no easy way to tell how much is being spent and where.
I thought about contacting both groups, looking for skeletons, conducting interviews and turning this series of posts into a genuine expose’, focused on how and where the MMRF and IMF could improve. But that isn’t the original premise of the series.
The point isn’t simply to be critical, or try and make either of these groups look bad. I don’t have to do much digging in order to achieve that! The point is: Why can’t the MMRF and IMF just get along?
My impression, based on years of interaction and exposure to both groups: The MMRF and IMF don’t like each other. They don’t communicate well, share information or work cooperatively—at least as far as I can tell.
And that’s too bad. Each specializes in different things. Aside from a culture of distrust between the founders of each group, the only reason the MMRF and IMF don’t work together is money. Competition for the almighty dollar.
Like two government agencies with overlapping interests, the MMRF and IMF compete for funding, wasting lots of money. Fund raising is expensive—and the pool of potential myeloma donors is finite.
So each group spends more and more to raise money from a stagnant—or because of the poor economy—shrinking pool of donors.
And there’s more. Again, like elected officials running our government, there seems to be a disconnect between those calling the shots at the MMRF and IMF and the average patient. I have heard both groups criticized often by readers and fellow patients for spending too much on lavish, high profile fund raising events, leaving small donors feeling unappreciated.
Like recent criticism of President Obama and his wife, Michelle, for spending too much, traveling abroad or vacationing in high-end locals during tough times, so too the MMRF and IMF can be criticized for the perception of not being careful enough with small donor dollars.
But the biggest issue? A growing dependency on drug company dollars. Let’s examine this tomorrow.
Feel good and keep smiling! Pat