Earlier this year, I had the honor of being asked to mentor one of the four finalist teams competing for the grand prize in the Sanofi Partners in Patient Health ”Collaborate/Innovate” Challenge program. The stakes were quite high because the winning team would receive a check for $100,000—a very sizable amount for any non-profit organization.
This award program recognizes the efforts of at least two groups working together (the “collaborate” part of the program) to translate patient insights into novel solutions to improve the drug development process and address an unmet need in a different, creative way (the “innovate” part of the program). The partners on each team could include non-profit patient, provider or professional associations.
I was asked to mentor the Veterans Advancing ALS/MND team represented by Steve Hunt of the Innovative Solutions Consortium and Milan Karol of Robert Packard Center for ALS Research at Johns Hopkins University. Their project proposal focused on identifying the reason behind the high rate of ALS in veterans and determining whether the development of a personalized treatment might be feasible. The team proposed to accelerate the process of collecting and understanding cell pathways for members of the military to assess the suitability of existing drugs to delay or prevent the onset of ALS/MND, or slow the pace of the disease in various patient subgroups.
Usually in a mentoring relationship you may think that the mentor “gives” and the mentoree “takes,” but, in this case (and likely most cases), I learned and broadened my knowledge base by a tremendous amount. In essence, I got more than I gave. I learned about ALS from experts in the field in a way that was personal and moving. I learned about the lack of new treatments for ALS for the last 45 years and I learned that groups collaborating together, with commitment, drive and a sense of urgency, can make a very convincing argument why they should receive funding for their project.
In return, I offered them my perspective about working in Patient Advocacy at Genzyme, how to effectively tell their story to a panel of esteemed judges in a way that was compelling, impactful and real. I hopefully gave them a sense of how to describe the impact of ALS in a very personal way, conveying the sense of urgency to the panel of judges.
I’m happy to report that Veterans Advancing ALS/MND did indeed win first place! There were many tears of joy shed when the judges announced the winner. Sitting in the audience was Richard, a Marine with ALS, who was the inspiration for the presenters. When the judges announced that the ALS team had won, Richard burst into tears, but also got into action and put his wheelchair in high gear to join the presenters on stage and acknowledge their accomplishments. I also won, and feel that my personal growth as an individual and a patient advocate grew exponentially through the process.
Thank you to all four finalist teams in the Collaborate/Innovate Challenge program for the critically important work you do for so many people. Thank you, in particular, to the wonderful Veterans Advancing ALS/MND team for allowing me to play a small part in your journey.
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