About
The Multiple Myeloma Research Foundation (MMRF) is the largest nonprofit in the world solely focused on accelerating a cure for each and every multiple myeloma patient. Founded in 1998 by twin sisters Kathy and Karen Giusti after Kathy was diagnosed with multiple myeloma — then an incurable cancer with an average life expectancy of just three years — the MMRF was built like a biotech startup and run like a Fortune 500 business to drive breakthrough science forward with unprecedented speed. It is headquartered in Norwalk, Connecticut.
Mission
The MMRF's mission is accelerating a cure for multiple myeloma. It drives the development and delivery of next-generation therapies, leverages data to identify optimal and more personalized treatment approaches, and empowers myeloma patients and the broader community with information and resources to extend their lives.
What they do
The foundation's work is guided by three core pillars — accelerating novel therapies, driving personalized treatment, and empowering patients:
- Funding and speeding myeloma research, including grants and funding opportunities for researchers
- Running pioneering research infrastructure: the first multi-center tissue bank (4,000 samples to date), the first clinical consortium (80+ clinical trials), the CoMMpass longitudinal registry (launched 2011, by 2013 the largest myeloma dataset in the public domain), the MyDRUG platform drug trial (2018), and the CureCloud direct-to-patient registry (2020)
- Patient support through the MMRF Patient Navigation Center, Myeloma Mentors, education events, patient toolkits, and financial and transportation assistance
- Community fundraising through walks, marathons, and cycling events
History
Kathy Giusti was diagnosed with multiple myeloma in 1996, when there were no new treatments in the pipeline. A top pharmaceutical executive, she partnered with her twin sister Karen, a legal advisor, to found the MMRF in 1998 — the first research foundation dedicated solely to multiple myeloma. The organization went on to be first to build a collaborative tissue bank, first to sequence the myeloma genome (2008), and first to spearhead a clinical network in the disease.
Scale and impact
The MMRF reports that it has raised more than 600 million dollars for research, with more than 85 percent of funds raised going directly to research and related programs. Its clinical network has conducted nearly 100 trials and helped bring over 15 new drugs to market — an unprecedented achievement in oncology — and the foundation says its work has helped triple the life expectancy of patients diagnosed with multiple myeloma.
Financials
According to filings summarized by ProPublica Nonprofit Explorer (EIN 06-1504413), the Multiple Myeloma Research Foundation reported total revenue of about 34.0 million dollars and total expenses of about 41.9 million dollars for fiscal year 2023, with year-end assets of about 80.2 million dollars.