Diagnosed with multiple myeloma, Kathy Giusti was shocked to learn that the state of the art was the same as it had been in 1956, when her grandfather battled the disease.


Kathy Guisti
Kathy Giusti (photo by Forbes.com)

Kathy Giusti was an ambitious Harvard Business School graduate with a promising career in the pharmaceutical industry.  Her attention was focused on her work, her growing family, and their new home, but the trajectory of her life took a dramatic turn when she was diagnosed with Multiple Myeloma, a rare blood cancer, at the age of 37.  At that time, in the mid-90s, there was so little understanding of Multiple Myeloma that Kathy’s diagnosis was the equivalent of a death sentence; she wondered whether her one-year-old daughter would even remember that she’d had a mom.

The Multiple Myeloma Research Foundation

Seeking the best treatment she could find, Kathy was shocked to learn that the state of the art in 1996 was the same as it had been in 1956, when her grandfather had battled the disease – a testament to the lack of awareness, lack of funding, and ultimately lack of any progress in fighting this disease. Kathy felt frustrated and turned her personal charisma and business acumen toward solving this problem.  She founded the Multiple Myeloma Research Foundation to raise funds and attract talent to help combat the disease.

Kathy took a measured approach. She first identified the main reasons for the lack of progress: the rarity of MM meant that pharma companies had no monetary incentives to make the substantial investment needed to develop treatments. In the rare cases where research was happening, scientists jealously guarded their data and results. Kathy knew she had to attract funding and convince scientists who had been competitors to become collaborators.

Generous donations from organizations and peers who believed that Kathy could make a difference allowed MMRF to expand from a grant-writing role to a full-fledged foundation. Kathy set to work creating collaborative models to bring disparate researchers together:

 

The Multiple Myeloma Research Consortium

The Multiple Myeloma Research Consortium brings together top academic centers to conduct clinical trials, enrolling patients 10% faster than the industry average – a testament to the MMRC’s high level of efficiency. These trials have already given over 1,000 patients access to lifesaving treatments.

The MMRC’s biorepository is the largest, best, and first of its kind. Its 4000+ annotated GLP-quality bone marrow and blood samples allow researchers to conduct previously-impossible genomics studies.

The Multiple Myeloma Genomics Initiative is a leader in genome mapping. It has already mapped the full genomes of over 200 MM patients. Further, the results of this research were made widely available to hundreds of researchers worldwide via a public portal – a pioneering step in open collaboration.

The MMRF is also leading the charge toward personalized medicine with the CoMMpass study, which aims to recruit 1000 patients and learn how their unique genetic profiles impact the progression of their illness and their response to treatments. This project represents a significant partnership between academia and industry.

MMRF chart of achievements.png

 

Impact

The MMRF’s innovative approach to disease research has attracted praise and investment, and contributed to unprecedented progress in improving the MM prognosis. Kathy and her organization have been recognized by HarvardTime Magazine, and Forbes. The foundation has attracted $250 million in donations to date, which has been used to fund 500 researchers and bring 6 FDA-approved drugs to market. As a result of new drugs and treatments, the average life expectancy for those diagnosed with MM has more than doubled, from 3 years to 8 years.

The impact that the MMRF and Kathy have made on the lives of those with MM is enormous. What’s even more tremendous is the potential for catalyzing progress in other diseases by applying a similar business model. Anne Quinn Young, VP of Development and Strategic Partnerships at the MMRF, described what sets this organization apart from others: “Our donors tend to be entrepreneurs who appreciate our business-oriented approach to nonprofit work – we’re willing to take risks but always backed by a sound business plan.”

How can we work together to apply a similar model to help connect stakeholders in autoimmune disease and lead to faster treatment and cures? All ideas welcome!


 

First posted on Dr Bonnie 360 on 7/3/2014.  Republished on TDWI with permission of the author.

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Bonnie Feldman, DDS, MBA
As principal of DrBonnie360, Bonnie Feldman, DDS, MBA brings a unique triple lens to her consulting, speaking, and writing. She combines her expertise as an entrepreneurial dentist, a Wall Street analyst, and a digital health consultant to always ask the questions of how new digital tools and data can help each of us. She interviewed more than 200 digital health companies and attended over 60 meetings. DrBonnie360 is an invited speaker for SXSW, Stanford Medicine X, Bio-IT, Data to Drugs to Diagnostics, StrataRx, Games for Health, the Center for Connected Health, the NY eCollaborative Digital Health Summit, the mHealth Summit, and Ideas LA. Her work is featured in Medium, O’Reilly Strata, Greatist, Forbes and The Doctor Weighs In. DrBonnie360’s recent multimedia work spotlights, “The Invisible Epidemic of Autoimmune Disease,” “The Lonely Voices of Autoimmune Disease,” and “Bridging the Autoimmune Abyss Through New Discoveries.” Using company interviews, extensive scientific literature reviews, and an analysis of the conventional and integrative care landscape, DrBonnie360 uncovers a large and growing need in the autoimmune community. She is working with forward-thinking companies to apply new data and digital tools to reshape research, diagnosis, treatment, and prevention of autoimmune disease. She welcomes collaborative partners in this initiative.

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