Big Sis In Burgundy: A Call To Action
If you didn’t read Sean’s Burgundy Thread: Myeloma & Shiny Yellow Volkswagens, do not let another minute pass before you do. Sean did a far better job than I did in Me & My Big Mouth of bringing light to multiple myeloma versus the “common cancers,” with terrific evidence of what I alluded to – once you are in the multiple myeloma family, suddenly you find out there are a number of people you know who are, too!
Sean’s column also brought to light excellent statistical information about the number of new multiple myeloma cases reported in 2010 (20,180) versus some of the more “common cancers,” – colon (102,000), prostate (217,000), breast (209,000), and melanoma (68,000).
But the one that really got me was “estimates for various types of leukemia were given at roughly 43,000 newly diagnosed cases.” So that number is about double the number for multiple myeloma, but it seems to me, heretofore a casual observer, that the Leukemia & Lymphoma Society (LLS) is far more visible than the Multiple Myeloma Research Foundation (MMRF).
I recently received a direct mail appeal from the LLS, complete with cheerful Ziggy return address labels. Over the last four years, the LLS has called me several times and asked if I would be a neighborhood captain. This means they will send me a box of solicitation materials, and I will address these to my neighbors, asking for their support in the fight against blood cancers.
How did I attract their attention? My best guess is that when I made a gift to the LLS in honor of a dear friend who was battling lymphoma, I hit their radar. When they have called, with all good intentions, I have agreed to the task. I must confess, however, that I have yet to distribute these materials to my neighbors, opting instead to send another check.
Now I am sitting here with the Ziggy mailer, and I am torn. More than ever, I want to be an active participant in the quest to find cures for all blood cancers. But it is hard for me to get excited about the LLS when the words “multiple myeloma” or heck, even “myeloma” don’t appear anywhere in this mailing.
My educational background is in marketing. I minored in the subject as an undergrad and hold a master’s degree in the field. For the last twenty years, I have worked in alumni relations and through training and practice, I know that when someone gives to the LLS, they likely do not associate this gift with helping all blood cancers. In a similar fashion, those who give to the American Heart Association most probably do not know the work this organization does in the area of stroke.
So, I now turn to the work of the MMRF, which, admittedly, I have yet to fully research. There is one observation I can make, minor though it is. In the last three and a half years, I have run 14 half marathons and two 10Ks. At every one of these races, I have seen a very strong presence of the purple shirts proudly worn by the LLS’ Team in Training. What I have not seen is anyone wearing the orange MMRF’s Power Team shirt.
There are so many things I want to do to help bring awareness to multiple myeloma, selfishly, so that we can find a cure during my sister’s lifetime and extend her time with us. Like many of us who have a loved one we support, we may have jobs and families of our own, so we don’t have the luxury of devoting our every waking moment to multiple myeloma awareness.
Let me propose that we all consider one thing we can do, no matter how small, and do it in the next two weeks. I’d be really interested in hearing from readers about what activities they have engaged in since becoming part of the multiple myeloma family.
After Me & My Big Mouth, I had begun thinking of what my theme would be for this article, and the call to action seemed like the appropriate way to follow up on my concerns that multiple myeloma is “lost in the shuffle.” Sean’s column was a sign for me that it was time to start taking the next steps.
Before you hear from me again, I am going to commit to checking my calendar against the MMRF Power Team schedule and if there is a race I am able to do, I am going to sign up for it.
I’ll do other things, too, like continuing to send Deana an encouraging card each day, which for me is an important way to put something physical in her hand to let her know I care. She worried I was going off the deep end the day I sent one from my three dogs, so they have stopped corresponding with their aunt.
The last book I finished was “Sole Mates,” an account of a 3,000 mile walk a couple from Washington undertook in 1996 to raise money for Habitat for Humanity. They walked across the United States, finishing in Atlanta in time for the 20th anniversary celebration of this outstanding organization. One quote from the book which resonated strongly with me was:
“Fulfillment of dreams does not come easy. It is with struggle that we appreciate the accomplishment.”
For those of us, patients and caregivers, who dream of a day where there is a cure for multiple myeloma, it will be a joy beyond description to celebrate that accomplishment. Until that time, we’ll appreciate all our progress and the effort needed to achieve it.
If you are interested in writing a regular column to be published on The Myeloma Beacon, please contact the Beacon team at .
Good article, but I just wanted to let you know all the help I've received from the LLS for my myeloma diagnosis. Even though myeloma isn't in their name, a large part of their funding goes to myeloma patients. I'm very grateful to them for their assistance!
I wholeheartedly agree with Carol. The LLS is wonderful and very responsive to the needs of the MM community. It would be nice if myeloma was somehow in their name but not required in my eyes.
Thanks for this feedback. I am glad to know LLS has been helpful. I will correspond with them to see if they will work to include MM in their materials. It never hurts to ask.
I think there are a lot of great organizations helping patients and families with cancer including lls and they all need support and have a place.. However I have chosen to direct most of my support to MMRF because of their laser focus on new drug development for Mutiple Myeloma. 3 years ago I started a Kayak Race to raise money For MMRF and awareness for MM. The race is the Sweetwater Paddle For the Cure. Web site http://www.beatcancerwithapaddle.org. Come paddle next spring!
Arnie Goodman
Debbie -- Another good article! I, too, receive the LLS mailings for the same reason you do. It sounds like MMRF just needs a louder voice and more marketing efforts, and your proactive stance is they type of encouragement they need. I really admire what you are doing for Deana -- keeping you both in my prayers.
Since joining the MM family in 2009, I have focused my efforts on individualizing the dosage regimen for new and future patients. Each patient responds differently to the same amount of a treatment agent both in terms of efficacy and toxicity. To avoid the disasters of dexamethasone and bortezomib where patients were overdosed resulting in needless side effects such as peripheral neturopathy without reduction in MM loading, the idea is to determine the individualized treatment regimen for a patient BEFORE treatment is started not after untoward toxicities are experienced. (see my article in the Opinions section of the Beacon)
I have been unsuccessful raising support from the MMRF for my colleagues and I in the Cancer Care Engineering group at Purdue to demonstrate this work in a proactive study in the clinic. The MMRF claims that their work is aimed at a cure. However, it is becoming clear that "cure" may be an illusion. As we use molecular biology to unravel the mysteries of MM we are finding it is very unique to the individual. For the foreseeable future, a more realistic way to treat MM is to consider it a chronic disease (like high blood pressure) and maximize the longevity and quality of life of the patient.
Debbie I would love to solicit some of your marketing skills to help us achieve this rather limited goal. It could be accomplished in a timely fashion and would help your sister and most survivors struggling with this incurable disease.
Oh yes, if we develop this personalized approach to dosing for MM we would share it with the LLS community.
Deborah, I received funding for the copay of my revlimid by the LLS from Jan-June, 2011. They do mention myeloma in all the literature I have seen and my friend ran a 5 K in my name for LLS and again their information contained myeloma facts. Unfortunately for me I did not financially qualify for a LLS grant in July. The were granting extensions last year for income ceilings and they are not granting them any longer. I am very grateful for the six months grant that put me into catastrophic coverage. However if I am still on revlimid in Jan 2012, I will get the revlimid in Canada. I read the earlier article Gary wrote and with no special knowledge other than my IGG Kappa MM diagnosis, stem cell transplant, and four years since diagnosis I suspect in my "gut" that he is on to something. From side effects of the meds we take, reactions to chemo, and day to day quality of life we are all different and each have a personalized version of mm. In lieu of a cure I will take chronic disease. My treatment and response will not be exactly like anyone else. Linda
I am doing the Chicago half marathon in August as part of the MMRF power team. MMRF is a fantastic organization, and the executive director is a brilliant woman who has received recognition from numerous publications and universities for her work to accelerate MM treatments. (FYI, if anyone would like to donate to MMRF and sponsor my run, here's the link: http://www.active.com/donate/2011mmrfChiHalf/CHIHALFSLimb)
I would also add that LLS and MMRF have different missions. MMRF is more focused on accelerating treatments; it is not a patient support organization. I don't think there is an MM organization focused on advocacy/patient support like LLS.
I am still a big fan of the International Myeloma Foundation in addition to the MMRF and the LLS. They all are great support organizations.
Progress toward fundraising goal
for all of 2020:
15%
For more information, see the Beacon's
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