Big Sis In Burgundy: Article, Responses, Action!
My last column, A Call to Action, generated more feedback than the previous three. Clearly, I struck some nerves.
It was great to get more information on the work of the Leukemia & Lymphoma Society (LLS) and its efforts toward eradicating blood cancers. I deeply appreciate all the LLS does and in no way meant to disparage the organization. Rather, I’m envious of the LLS’ visibility and want to achieve the same for the Multiple Myeloma Research Foundation (MMRF) and other entities focused on the cancer that has struck my family. This is personal!
In reviewing remarks from several readers, one possible call to action for those who share my concerns would be to reach out to the LLS and advocate for inclusion of multiple myeloma in its literature and appeals. Based on my experiences, it would likely result in increased donations for the LLS programs.
Alicia O’Neill, who heads up the MMRF Endurance Events Program, wrote me to provide some additional information about the program. She wrote that this year, just four years after their program started, 550 people will be participating in marathons, half marathons, triathlons, cycling events, and other “great races” that will raise $1.7 million, 90 percent of which goes directly to multiple myeloma research.
So, as promised, I have visited the MMRF Power Team website, and I am now registered for the Bank of America Chicago Marathon on October 9. This will be my first marathon. After completing 14 half marathons, many friends have asked when I would do a full marathon. My response up until recently was, “I may never do a full.” Now we know that will not be the case. More on this topic in a later column, for sure.
Several other readers shared event-based information, which can be found in the comments section following my last article. I’ll also use the Beacon’s multiple myeloma forums to call attention to these wonderful events and other efforts. Thanks to all who wrote.
Another activity I have begun is reaching out to companies sponsoring the Susan G. Komen Foundation, as I come across them. I’ve emailed ProFlowers and asked them to consider a special burgundy bouquet for Multiple Myeloma Awareness Month in September. I’ve done something similar to Planet Smoothie. No responses yet, but it cannot hurt to ask and my list of companies grows almost daily.
If others wish to do this, please let me know of companies you contact so I may add my voice to your efforts. Together, I am confident we can effect change in myeloma awareness.
There were other responses that I received after my last column that have sparked ideas for future columns, so I look forward to sharing more with you in the near future.
For any readers interested in how Deana is doing, she has started posting to her CaringBridge site. The last two journal entries have brought me to tears, so I welcome any thoughts and/or advice from patients and caregivers who have the time to read and react.
Until next time, Beat The H*ll Outta Multiple Myeloma!
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Hi, Deborah
Are you aware of the International Myeloma Foundation?
No one seems to mention it on this site
Here is their website that talks about fundraising:
http://WWW.myeloma.org
Again, I support all the myeloma groups.
In fact, one of the most informative documents I've seen comes out of Texas and is called
Myeloma 101
Hope this helps
Your column touches a special place for me. Of all the things I have read about multiple myeloma, since my December 2009 diagnosis, yours is one of few that I have forwarded to my siblings. They are overwhelmed with the enormity of information needed to understand this disease, but they certainly have not trouble with the emotional issues of having a sister with this illness.
Today, after reading your column, I attempted to check your sister's Caring Bridge site and am familiar with this service, as I also keep up a site there. But I am missing something in finding her journal. Perhaps I need her last name? Are you able to guide me?
Sandy -- Thanks for this information. I have "liked" IMF on facebook and will spend more time looking into their website.
Janice, Thank you so much for these kind comments.
Deana's caring bridge is http://www.caringbridge.org/visit/deanachiusano -- I cannot believe I forgot to include that!
I also wondered, as Deborah commented, why the IMF seemed to be left out or downplayed. There are three national organizations for Myeloma patients and caregivers, the MMRF, IMF & LLS. They all do great work and I encourage everyone to support and take advantage of their resources.
It is true that most people do not associate the LLS with Myeloma, although in the last few years they have made more of an effort to identify themselves with all the blood cancers. They have some great programs and outreach directed specifically for Myeloma patients: First Connection, financial aid and in the SF Bay Area, educational programs and the annual seminar summing up the ASH conference. I volunteer with First Connection talking by phone one to one with newly diagnosed myeloma patients and often those facing an auto transplant.
The IMF has fantastic Patient & Caregiver seminars I have attended, where it is possible to talk directly myeloma specialist MD's, they have excellent pamphlets on every aspect of myeloma, a great help phone line, they direct people to local myeloma specialists, and much more. When I have a myeloma question I often go to the IMF for the answer.
The MMRF is leading the way in myeloma research and we have them to thank for many of the recent breakthroughs in treatment. They have updated their patient educational material & support. There are not enough good things to say about the MMRF. My family and friend have joined me in the Race for Research 5k fundraising events.
The number of cancer support organizations and information can be overwhelming. These three national Myeloma organizations are a tremendous help in making sense of it all.
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