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A Young Reader’s Amazing Loyalty & Support For The International Myeloma Foundation (IMF)

Home/A Young Reader’s Amazing Loyalty & Support For The International Myeloma Foundation (IMF)

A Young Reader’s Amazing Loyalty & Support For The International Myeloma Foundation (IMF)

Two weeks ago I concluded a group of somewhat critical articles about the MMRF and IMF. The idea for the articles came from several fellow multiple myeloma patients I know. The first article, which ran Tuesday, September 14, 2010 was titled What Is The Best Way To Conduct Multiple Myeloma Research?

Subsequent articles included A Multiple Myeloma Survivor and Donor’s Concerns About How Donated Funds Are Spent ** Multiple Myeloma Research Foundation Does Important Work. Too Bad It Is Obscured By The Group’s “Over The Top” Aggressive Fundraising Style ** A Closer Look At The International Myeloma Foundation–Why Can’t The IMF and MMRF Just Get Along?  and finally, The MMRF & IMF Need To Remember Who They Represent–The Patient–Not The Drug Companies.

As hard hitting journalistic standards go, I felt this was a fairly “soft” expose’. But I was critical of the MMRF and IMF’s inability to work together more closely. I also shared my concerns—as well as a fellow patient’s concerns who had worked with, and donated generously to the IMF in the past—several times in the articles.

Last night I received a comment alert e-mail from my September 17th article about the International Myeloma Foundation (IMF). The comment was so long, the reader who wrote it had to split it into two parts. It was emotional and well written by a high school student named Ally. I could tell right away she had given her comments a great deal of thought.

Since most of you would never think to check comments about stories several weeks back, let me reproduce Ally’s thoughts here again for all to see:

This will be in 2 parts – sorry, but I was not able to post the whole thing. Part 1:

You state that, “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.” However, that is incorrect, small donors do in fact feel appreciated, and I can speak from experience.

My brother and I started a lemonaid stand and raised only $350 for the IMF (I was about 9 and my brother was 4). The IMF was very appreciative and grateful. We were even featured in an edition of Myeloma Today, and were thanked multiple times for our efforts. The IMF went out of there way to make my brother and I feel like we were making a difference.

I am currently 17 years old and a senior in high school, my brother is in 7th grade. We have been dealing with my dad’s myeloma for 10 years, so I have a good understanding of not only the disease but of the good things the people at the IMF do each and everyday for patients and their families.

I’ve attended at least 8 IMF Patient & Family Seminars to date. I’ve heard Susie Novis say that she likes to spoil patients at the seminars because they already spend too much time in doctor’s offices and hospitals. She strives to have the seminars at nice hotels because she wants us to feel like it’s not just a myeloma seminar, but to have a little fun too. What some people may not realize is that the IMF asks everyone, including vendors, to consider donating their time, food, materials, services to help save money. Money that can be better spent on patient programs, publications, research, etc. for us. I don’t think that’s extravagant in any way, but just plain smart . . . and thoughtful.

As a student, I spend much time on the computer and since I’m particularly interested in myeloma information, I frequently am on the IMF’s website. (BTW, the IMF’s Annual Report is on the bottom of the home page). I’d like to point out that regarding education and research for myeloma there are are a number of programs the IMF has pioneered.

Ally continues:

The International Myeloma Working Group (IMWG) is compromised of over 100 myeloma specific researchers from all over the world. They meet annually and have come up with guidelines as well as published papers on topics from diagnosis, imaging techniques, uniform response criteria and much more. I would suggest to read about all the research the IMF does by simply go to www.myeloma.org and click on Research (there’s a lot there).

Speaking of research, the IMF’s Bank on a Cure (BOAC) is the first Myeloma specific DNA bank in the world. I remember reading that Dr. Durie’s abstract on a potential link between genetic pathways & environmental risks for Myeloma was singled out as part of 2007’s “Best of ASH” session! Pretty amazing!

As I am looking at colleges to attend next year and contemplating what to become in life, nursing is certainly a noble profession. When I look at what the IMF Nurse Leadership Board (NLB) has done, I am impressed to say the least. The NLB guidelines for management of side effects of novel therapies can be life saving. They’ve been published in the Clinical Journal of Nursing Oncology in 2008.

I could obviously go on and on about all the programs designed just for myeloma patients and their families that the IMF continuously develops, but you can all read the website for yourself. It is unsurpassed in my opinion. The IMF not only thinks out of the box, but they think of the patient each and every day and what will help them. I know that they have asked “what can we develop that will help you” many times at seminars.

Last but not least, I’d just like to close by saying that my family embarked on a journey in 2007 of awareness and education for myeloma patients. You can read more at www.myelomamobile.myeloma.org It’s premise was simple: to drive across the country to reach out to patients and their families and empower them through education, provide support and let them know they are not alone. My dad thought of this when we were on vacation in a remote area of the country and wondered what myeloma patients do for treatment and expert opinions. He presented the idea to the IMF and they ran with it. The day we got out of school we left to travel across the country and made over 20 stops before coming back home 90 days later. The reason I mention this is that this project was strictly for outreach, awareness and education. No fundraising was involved or asked for during the entire trip.

People helping people is what it is all about. Not criticizing or trying to pit one organization against another. In the free market, isn’t competition a good thing? It makes each organization better and on their toes to do their best.

Just my thoughts,
Ally Tuohy

Here is how I responded last night:

Dearest Ally-

Such heartfelt, thoughtful comments. Thank you! I have been to several Patient/Family seminars as well. I helped with the IMF’s booth at ASH last December. I also feel the IMF is doing a great job! But the IMF–like all of us–can always do better. Think of it like big family. Family members argue and sometimes don’t agree. That doesn’t mean they don’t love each other! I thought I went easy on the IMF. Look back at my story again.  A Closer Look At The International Myeloma Foundation–Why Can’t The IMF and MMRF Just Get Along?  What did I say that was so critical? Please remember I am a myeloma patient and IMF member. I’m glad my story got you thinking about another side to the story. I’m not happy it upset you so. Your passion is commendable. Your families cross country trip is legendary. Thank you for helping us! Most readers won’t ever see your comments, since the articles you commented on were posted over two weeks ago, so I am going to include them in the body of my site this week. Very well written.  Keep up the great work!
Pat

Isn’t that cool?  The IMF’s patient friendly Website is amazing, providing multiple myeloma patients access to volumes of helpful information and clinical studies.  Still, why aren’t the IMF and MMRF doing more to try and reign-in the out-of-control costs of anti-myeloma chemotherapy drugs? And, once again, why can’t the two groups work more closely together, eliminating duplication of expenses, services and overlapping research?

Ally wasn’t the only one critical of my articles.  Supporters of the MMRF wrote in and commented as well.  For the record as a multiple myeloma patient, I’m glad both groups are there to help.  I just hope every penny raised is used as efficiently as possible to help find a cure!

Feel good and keep smiling!  Pat