December 3, 2009
Nearly 600 medical research executives, scientists, policy makers, and funders today convened in NY to explore novel development approaches and innovative funding strategies at the inaugural Partnering for Cures meeting. The MMRF and MMRC were well –represented at the meeting.
FasterCures, part of the Milken Institute, convened Partnering for Cures to facilitate multi-sector collaborations needed to turn a scientific discovery into an accessible therapy. The meeting was intended to highlight best practices in the conduct and management of medical research and approaches that could streamline the process. The leadership of the MMRF and MMRC was invited to make several presentations about the innovative collaborative research and development model that is the hallmark of the MMRF. Kathy Giusti, MMRF Founder and CEO, presented her perspectives as the leader of the MMRF during the opening plenary session on Wednesday morning. On that same panel was Bob Beall, CFF President and CEO and MMRF Board member. Bob's leadership in the area of venture philanthropy is unparalleled and we are incredibly lucky to have him as a member of our Board. Leading the panel was Margaret Anderson, Executive Director of FasterCures. Kudos to Margaret for her work on this amazing meeting and Mike Milken, head of Fastercures, for his insights into improving medical research.
Susan Kelley, MD, CMO of the MMRC, participated in a panel discussion to allow the audience to learn first-hand from “cure entrepreneurs”, nonprofit leaders who are implementing unique business models to produce dramatic results for patients. Louise Perkins, PhD, CSO of the MMRF, presented further details of the MMRF and MMRC collaborative model for myeloma drug research and development at a session which included many interested philanthropists, executives and scientists from various organizations. One-on-one connections between the meeting participants were facilitated through a number of partnering sessions.
Overall, it is invigorating to see a groundswell of interest to build bridges among the key stakeholders (patients, researchers and industry) to advance medical science in an approach we have pursued for many years.
November 24, 2009
Over the last few weeks, I have been privileged to participate in several scientific conferences on the subject of cancer research. The first of these meetings was held by the National Cancer Institute (NCI) in Virginia, the second was an international meeting in Boston on Pharmaceutical Oncology R&D and most recently another meeting was held in the same locale that is known as the Molecular Targets meeting sponsored by the American Association for Cancer Research (AACR), NCI and the European Oncology Research and Treatment Organization (EORTC). As a field, the nature of research is changing to embrace more applied, so-called translational, research. The NCI is taking a leadership position to push this transition along. Discoveries are being made at the bench and translated to the patient's bedside (and back again) at an ever increasing pace and laying the groundwork for personalized medicine in the future. What was most exciting at these meetings was hearing from international leaders and researchers that the MMRF and MMRC are widely recognized as leaders promoting continued advancements in myeloma research and drug development. Because of the tremendous collaborations that have been established involving researchers around the world, the stage is set for the next generation of treatments and for the coming wave of matching patients with drugs through personalized medical approaches.
From a scientific perspective, one of the most exciting discoveries described at the Molecular Targets meeting was around a gene called IDH1 which appears to be mutated in some types of cancers and is correspondingly subverted to a different purpose in tumor cells. These observations suggest that there is an entirely new collection of targets for drug intervention that could result in drugs specifically targeting the tumor and sparing the patient's normal cells and thereby exerting fewer side-effects than traditional chemotherapeutic approaches. Because of the work that the MMRF has already undertaken through the establishment of the MMRC Tissue Bank and through our successful sequencing of the myeloma tumor genome in many multiple myeloma patients' samples, multiple myeloma patients as a group stand to be among the first to benefit from these findings in the very near future.
-Louise M Perkins, PhD
Chief Scientific Officer
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.themmrf.org/living-with-multiple-myeloma/newly-diagnosed-patients/what-is-multiple-myeloma/