Yesterday I promised to tackle both of these important questions this week:
Is it better to have a number of smaller groups raising money and doing multiple myeloma research—or would it be better to have one or two larger organizations doing that?
Which of the many multiple myeloma foundations or research groups should we support with our hard earned, patient dollars?
A tall order indeed! My first thought was to contact my dear friend, Karl, founder of the large and very successful Stillwater, Minnesota Multiple Myeloma Support Group.
Karl, and his lovely wife and caregiver Loraine, have donated generously to a number of multiple myeloma related causes since his diagnosis a number of years ago. I joined the Stillwater support group three years ago. Since then, Karl has shared a number of concerns he has about how money is spent and accounted for by several of these organizations.
So it is only natural I would contact Karl and get his opinions on both questions. Here is his response:
YES, I AM CONCERNED ABOUT THE NUMBER AND NUMEROUS APPROACHES TO FINDING THE CURE FOR MULTIPLE MYELOMA. THEY RANGE FROM “ORGANIZED MULTIPLE MYELOMA ORGANIZATIONS”, (SEEMINGLY COMPETING WITH EACH OTHER FOR RECOGNITION AND DOLLARS)…..RESEARCH ORGANIZATIONS IN UNIVERSITIES/COLLEGES…..RESEARCH ORGANIZATIONS IN HOSPITALS……MULTIPLE MYELOMA SUPPORT GROUPS……AND …..INDIVIDUALS WITH MULTIPLE MYELOMA.
WITH ALL OF THE ABOVE SOLICITING FUNDS, FROM THOSE OF US PATIENTS MOST CONCERNED ABOUT FINDING A CURE WHILE SELF FUNDING OUR OWN ILLNESSES ALONG WITH OUR INSURANCE PROVIDERS…..THE VAST AMOUNT OF MONEY NEEDED TO BE RAISED TO ACCOMPLISH THE CURE, REQUIRES CAREFUL “USE” OF DONATED MONEY. WITH THIS IN MIND, I FEEL THAT A PORTION OF THESE FUNDS IS WASTED ON ADMINISTRATION AND CARELESS USE OF EXPENSED MONEY WITHIN THESE DIFFERENT ORGANIZATIONS.
THEREFORE, I WOULD FAVOR A CENTRAL POOL OF FUNDS TO DONATE TO, IN ORDER THAT WE MAY HAVE AN ACCOUNTING OF THE RESULTS ALONG WITH PERIODIC UPDATES TO THE MULTIPLE MYELOMA COMMUNITY AS TO THE PROGRESS AND TIMING OF THE “POTENTIAL CURE.”
THE ABOVE WOULD HELP SOLVE THE FRUSTRATIONS OF “WHO TO CONTRIBUTE TO,” TO GET THE BEST USE OF OUR DONATED MONEY. ALSO, THE ORGANIZATION COULD BE RESPONSIBLE TO INTERACT WITH THE “TOTAL CANCER SOLVING COMMUNITY” AND ALSO TO OBTAIN THE GOVERNMENT FUNDS REQUIRED TO AUGMENT THE NEEDED RESEARCH DOLLARS.
Thanks for your input, Karl! I understand from some of our lengthy, late night conversations on the subject that Karl is concerned about the lack of transparency and careless spending by the largest of the multiple myeloma related organizations, the International Myeloma Foundation (IMF) and the Multiple Myeloma Reasearch Foundation (MMRF). I believe he echoes those feelings in his statement above. I don’t recall Karl mentioning the Leukemia & Lymphoma Society (LLS) during our discussions.
It sounds like Karl would support a fund-raising and research program like “Stand Up Against Cancer,” specifically targeted against multiple myeloma, as long as it includes open sharing and communication between other cancer groups.
Just how focused, targeted, efficient and transparent are these groups? Do we need some form of centralized control to take advantage of economies of scale by reducing costly duplication of programs and staff? Let’s start with the MMRF tomorrow.
Feel good and keep smiling! Pat