At last week’s Partnering for Cures meeting, Kathy Giusti (who helms the highly successful Multiple Myeloma Research Foundation) described her initial realization that if things were going to change for multiple myeloma patients, MMRF needed to ‘host the party’ – i.e. take the risk, invest the money, develop the research infrastructure – then call industry to the challenge. MMRF have pioneered the use of scorecards to keep metrics (measures of progress) on their team of investigators– keeping them on their toes and rewarding success with more funding. It is a controversial concept for some academic researchers but those embracing the MMRF model have had the joy of actually moving drugs forward to the clinic.
As Debi Brooks (Michael J. Fox Foundation) described, today, donors (or as they are now widely being termed ‘philanthropic investors’) are much more engaged in the day-to-day of research project oversight than in the past, and they too want to see metrics and understand how their dollars are making a difference. However as there are few if any miracles in life, it is important for the philanthropic investor to understand that success in research is more often incremental (e.g. “now we understand why the drug does not work and have another drug in mind to test”) than mind-blowing (e.g. “drug works, disease cured”). Today’s philanthropic investors may now have a better acceptance of this risk than in the past, and the fact that there is a possibility of failure as well as success.
An important role for a Foundation is to maintain a ‘Landscape’ of the current state of research in their area (as the Children’s Foundation does), who is investing in it and what has been accomplished, so they can show the philanthropic investor where their ‘investment’ fits into the picture and how it is helping research progress. The Helmsley Charitable Trust has embraced the concepts of risk, money, metrics and landscape to inform their investments in Type 1 diabetes, a disease area that already receives sizeable funding from the federal government and the powerhouse Juvenile Diabetes Research Foundation and has attracted some industry interest. The Helmsley group engaged in a landscape analysis that identified two areas of need that they are now supporting: a mouse model of Type 1 diabetes to truly recapitulate the human condition; and a universal Type 1 diabetes patient registry.
More on Partnering for Cures later this week.
