“When one is first diagnosed with cancer of any sort it is like being knocked flat—it is shocking and alarming and you think you are isolated from the world,” says David Ogilvy, of Greenwich, CT, who was diagnosed with Multiple Myeloma in 2005. “This had happened out of the blue with no warning at all. I was feeling happy and healthy one minute and when I heard that I had an incurable, deadly cancer, I could scarcely breathe.” The abruptness of Ogilvy’s diagnosis is common: symptoms vary by patient, with the early stages of myeloma often presenting no visible signs, or vague symptoms similar to those of other conditions. Multiple myeloma is a cancer of the plasma cells and the second most common blood cancer. And while considered “rare,” the diagnosis is shared with an estimated 30,300 adults who will be diagnosed this year in the U.S.; 12,500 people are predicted to die from the disease.
Ogilvy says the Multiple Myeloma Research Foundation (MMRF) and his wife have been lifelines for him. “Meeting Kathy Giusti [Co-Founder of the MMRF and Chief Mission Officer] was extraordinary; she gave us immediate hope as well as direction in which to go forward as a family. [She reassured me] I would survive, and I would survive with a great quality of life.”
This year, the MMRF will be the main beneficiary of the 2018 Greenwich Wine + Food Festival on September 21 and 22, a weekend celebrating the vibrant culinary landscape of this area, with great food, beverages and music.
A Research-Focused Strategy
While many foundations are raising and distributing money, MMRF does that and much more. “We are the ones who generate, interpret, and activate the large collection of high-quality data, accessible to all. We are the ones who orchestrate the people, the programs, and the technologies necessary to speed the discovery of a cure—for every patient,” says Anne Quinn Young, senior vice president of marketing and communications at MMRF. To date, the organization has raised more than $400 million, with nearly 90 percent of every dollar raised going directly to cancer research.
MMRF’s innovative data bank and learning network have made it possible for the global research community to work together in a seamless way. The Multiple Myeloma Research Consortium offered 25 research institutions and cancer centers that are speeding new therapies through trials and actually helping patients now—giving hope for today, not just for the future. “We’re truly grateful for the support we have received locally—this is where the MMRF began. So many of our friends and neighbors have stood with us from the very beginning and helped us to drive unparalleled advancements for cancer patients. Working with our partners, the MMRF has helped bring 10 new drugs to market and these innovations have tripled patients’ life expectancy,” says Giusti. These remarkable results can, in part, be accredited to the MMRF’s use of precision medicine, a treatment approach that matches drugs to patients based on their genetic profile and other unique characteristics of their cancer. The deep knowledge well amassed by the MMRF allows patients to get the best care, wherever they live. “In myeloma, what we would really love is to have a database so huge that no matter what your subtype was, any community oncologist can go into the dataset we’re building that is genomic, clinical, longitudinal and structured and be able to say based on everyone before you, and that subtype and everything they did, here’s where the outcomes were better,” says Giusti.
A Supportive Community
More than 25,000 people engage with the foundation through events, patient education programs, webinars and research initiatives. Says Suzie Binch, from New Canaan, CT, who was diagnosed in 2013: “Participating in the MMRF Tri-State Walk/Run was such an obvious and good choice. Here you have a very large group of patients, family and friends gathering together in support of one another and the MMRF. There is nothing better and it is truly inspiring.” In addition to the 5K runs—the next one is October 20 in NYC—there’s also the Journey Endurance Run/Relay slated for October 6. MMRF is the main beneficiary of the Serendipity Golf Classic, to be held June 12, and the 2018 Greenwich Wine + Food Festival on September 21-22.
For Ogilvy, learning that the MMRF was raising funds for innovative research as well as awareness was powerful medicine. “By joining this incredibly effective organization I created immense positive energy, which helped me as well as others. It was a real turning point—helping others helped us all, and the results of the MMRF are amazing.”