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MMRF Blog


August 31, 2009

First Day of School, Kathy Giusti, CEO

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

Perspective on 9/11 Emergency Workers and Increased Myeloma Risk, Anne Quinn Young, MPH

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.themmrf.org/living-with-multiple-myeloma/newly-diagnosed-patients/what-is-multiple-myeloma/


June 29, 2009

Perspectives from the DIA Annual Meeting, Anne Quinn Young, MPH

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.


June 23, 2009

Check Out the Recent Press Release from the MMRC, Anne Quinn Young, MPH, Program Director

Check out the recent press release from the MMRC.  We are thrilled to report that we have been able to shave 100 days off of the time to activate a clinical trial in the MMRC as opposed to a published benchmark.  This means potential cost savings for our biopharma partners as well as earlier access to promising treatments for patients.  By collaborating closely with our MMRC Member Institutions and initiating business solutions such as standardized contracts and processes, as well as site management via the MMRC Multiple Myeloma Program Coordinators (MMPC), we have additional proof that the model works.  Stay tuned for the data that show we also complete trials faster!

Read the MMRC Press Release Now: http://www.themmrf.org/about-the-mmrf/powerful-news/press-releases/multiple-myeloma-research-consortium-mmrc-activates-clinical-trials-30-40-percent-faster-than-industry-standard.html


June 3, 2009

Challenges and Opportunities for Personalized Medicine, Susan Kelley, MD, Chief Medical Officer

The data presented at the Annual ASCO meeting on new investigational drugs are of interest to all oncology researchers, and the opportunity to gather with large groups of oncology researchers to review and discuss these results is a critical part of the information exchange process in this field. There were approximately 175 abstracts presented from studies in multiple myeloma, including results from clinical studies ongoing within the MMRC clinical trials network. In addition, there were very informative presentations and discussions on early clinical trials of new drugs against pathways and targets that are relevant to myeloma, even if the study under discussion did not include patients with multiple myeloma. It is these early data that help the researchers in myeloma decide whether to investigate some of these emerging drugs in trials specific for multiple myeloma.

The theme of this year’s congress was “Personalized Medicine “. The entire field of oncology clinical research is at an important crossroads. We now understand enough of the biology of cancers, and have new drugs emerging that allow us to begin to tailor specific drug therapy against the molecular pathways to which a particular tumor, or indeed, a particular patient’s tumor, is especially “addicted” for growth. This will not be a short term effort. The tools for genomic and proteomic analysis need to be applied in a more widespread manner, in carefully constructed clinical trials, with the goal of matching patients with particular drugs or drug combinations. The field of myeloma research is well equipped to pursue this goal of personalized medicine. The scientific and clinical researchers who are our partners in the quest to develop new drugs to improve patient outcomes, and ultimately attain cures, in multiple myeloma, have already been collecting bone marrow samples for important analyses. The next step is to organize a large effort in partnership with our research partners and stakeholders, to design these clinical studies where patient treatment is assigned according to biologic markers and risk factors for a given patient. We cannot stress enough how important it will be for patients to participate in clinical trials as we attempt to move this field forward.

In addition to the efforts around personalized medicine, there were clinical trial results and discussions about important therapeutic issues in myeloma presented at ASCO. For example, with the improved outcomes reported as a result of treatment with the newer drugs that have become available for myeloma in the past 4 years, there are now questions raised about the optimal timing of autologous stem cell transplant—which patients, when and after how much initial therapy? All patients should continue to engage in these important discussions with their physicians.


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