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POWERFUL NEWS:
MMRF BLOG
October 5, 2009
We were so sorry to learn that Mildred Perry, the mother of golf pro Kenny Perry, passed away following a long battle with multiple myeloma. It is families like the Perry’s who inspire us to work urgently to bring patients better, more effective treatments, and we are truly saddened by their loss. Our thoughts are with Kenny and his family and friends during this difficult time, and we wish him the very best in next week’s President’s Cup.
August 31, 2009
I woke up this morning anticipating the craziness of my favorite day – the first day of school – and it wasn’t crazy at all. My daughter Nicole is now a sophomore in high school. Before I know it, she is dressed, has straightened her hair, and is ready to go with her schedule of classes and cheerleading practices. My son David, now in the 7th grade, grabs his bookbag he packed the night before and takes care of our new puppy before heading out.
As I watch them start their morning, I can’t help thinking, ‘How did I get so lucky?’ When I was diagnosed with multiple myeloma 13 years ago, I was told I would not live to see Nicole enter kindergarten. But here I am today, witnessing another rite of passage I never dreamed I would see – two wonderful, bright, independent children who I have been blessed to see grow up.
I treasure these days like today more than anything and I know that it is moments like these that all families living with multiple myeloma hope for. Today is truly a reflection of the support of friends and family and the efforts of all those who are working hard to advance cancer research. I cannot think of a better time than now to say thank you.
August 19, 2009
Over the last week, we have received many inquiries on the recent study “Multiple Myeloma in World Trade Center Responders: A Case Series” that indicates 9/11 emergency responders have an increased risk of developing multiple myeloma, a rare and fatal blood cancer. What this study shows is that out of more than 28,000 emergency workers who have been followed as part of a health monitoring program “9/11 WTC Health Registry“, eight cases of multiple myeloma were diagnosed. In the general population, six or seven cases would have been expected. Multiple myeloma in the general population is typically diagnosed in patiens who are at least in their 60s, but in this population, four of the cases were in workers who were less than 45 years old - in the general population, only one case in such young patients would be expected.
All of this said, it is important to understand that follow-up of these workers is limited, and more data are needed to better understand whether there may be a causal link. However, because multiple myeloma has been linked to exposure to very high levels of extremely toxic chemicals like Agent Orange or high levels of radiation exposure from the atomic bomb explosions in Japan, it is unfortunately not surprising given that these workers were exposed to what has been called a “toxic chemical soup” “9/11 Responders May Be At Raised Myeloma Risk“, which included known carcinogens, for up to several months.
The good news is that more progress than ever is being made in the disease - in recent years, survival from diagnosis has doubled - and so these and other patients who are diagnosed today will have many more treatment options in the future than those who sadly lost their battle with this as yet fatal disease.
To learn more about multiple myeloma, click here: http://www.multiplemyeloma.org/living-with-multiple-myeloma/newly-diagnosed-patients/what-is-multiple-myeloma/
June 29, 2009
This year was a historic meeting for the Drug Information Association (DIA) – thanks to the visionary perspective of chairperson Nancy Smith, PhD, former Director, Office of Training and Communications, FDA, for the first time, the patient perspective was presented with representation from the MMRF and from the International Alliance of Patients’ Organizations (IAPO).
Last year, Kathy Giusti delivered the keynote address, which led to my participating in two panels to represent the patient perspective on drug development at this year’s meeting. My remarks focused on how the MMRF educates the myeloma community to optimize current therapies as well as ensures that the community has safe and effective therapies in the future. With me on both panels was Ken Kaitin, PhD, Director of the Tufts Center for the Study of Drug Development, who described the MMRF as “changing the landscape in drug development and patient care”. Kathy had the incredible foresight and insight to recognize that the MMRF’s goal mirrored that of industry – to bring new (and of course effective) treatments to patients as quickly as possible – but that was more than 11 years ago! In today’s world, collaboration and transparent communications among all key “pillars” (ie, patients/patient groups, academia, industry, and regulatory authorities) are critical to ensure safe and effective treatments are developed and made available to patients as quickly as possible, and we are more than happy to continue to play the role of congregator and broker to maximize these partnerships.
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