He’s the CEO who poses for his official photo with the organization’s teddy bear mascot. You’ll find him out on a bike ride 100 miles through Death Valley side by side with advocates. He loves mingling in the crowd at fundraising walks, shaking hands and sharing hugs.
And it’s not an act. JDRF President & CEO Derek Rapp didn’t decide to adapt that way as a strategy. He believes his somewhat unique meld of corporate leadership knowhow, scientific research experience, need to do good in the world, and an “aw, shucks” approach to life in general is the right mix to help him lead the JDRF – one of the world’s top private funders of diabetes research – to the next level of success.
A volunteer in the making
Before diabetes even came into his life, Rapp was building his skillset for this role. In graduate school, he was awarded the “Spirit Award.” And in 1998, eager to make the world a better place, he helped found a volunteer-matching group. In his career, he’s headed up huge international groups and worked with venture capital to fund major programs.
Then came the moment that altered his course. “It was Nov. 15, 2004,” Rapp said of the day his son Turner was diagnosed with type 1 diabetes. “No one ever forgets that date.” While some families take a breather after a diagnosis, Rapp and his wife, Emily, attended their first JDRF meeting just two months later. In quick time, Rapp was in a leadership role as a volunteer, helping shape JDRF’s research program as a member of the International Board, while his wife took over as St. Louis chapter president.
Taking the helm
In 2014 Rapp was asked to lead the organization as president and CEO. It meant leaving a lucrative and steady job. It meant uprooting his family from their St. Louis home and starting a new family life in the heart of New York City. But when he looked at the role, Rapp knew it was right for him. “It was striking how in fact all the pieces of mosaic fit. It just began to make a lot of sense.”
So he said yes, taking the helm at a time of great promise. In late September, the Food & Drug Administration (FDA) approved the first hybrid closed loop system, known as the Artificial Pancreas Project, which has been heavily funded by JDRF.
“Indeed, the news was so exciting and made us hungry for more,” Rapp said of the FDA announcement. “It took our belief in our work to an even higher level. Looking at the story of the Artificial Pancreas Project and JDRF, I can truly see that we are quite a few number of pieces to that whole part.” He added that he was especially excited that the story is a success.
The road ahead
Still, he said, there’s more to do. Diabetes is a complicated disease, he admits, and a cure – as well as even more improvements in daily care – need continued focus. “To accomplish all we want to, we will have to look at all the systems in the body and find clever ways to disarm the disease.”
That, he knows, will take more than a personal touch and charm. “We have resource constraints.” He said that his organization sees many opportunities to potentially prevent, treat, and cure that have made significant progress. “That leads us to a place where this is more expensive.” His job, he added, will be to guide JDRF to fund all that and more.
Derek “completely understands the impact of T1D on families and communities,” said Mark Fischer-Colbrie, a member of the JDRF board. Rapp works tirelessly, using his business skills and ability to connect to lead JDRF forward, Fischer-Colbrie said. “Those efforts are made all hours of each and every day and range from determining how we can move research faster, to operating in the most efficient way, to finding the best ways to achieve success.”
A deeply personal connection
As Rapp’s son Turner embraces young adult life with diabetes on board, his other children also live with the identified biomarkers of diabetes. Still, Rapp said, this mission, this company he leads with teddy bears, sweaty hugs on Ride to Cure days, and a powerful business acumen, isn’t about him.
“I’m not thinking about my family member per se,” he said. “I’m thinking about everyone affected by this disease.” Rapp said he truly believes that even without Turner’s diagnosis, “this would feel every bit the same to me.”
He has great hope, too. “I am convinced that one day JDRF will realize its vision of a world without diabetes.” Until that day, Rapp said the organization will be focused on researching to discover better treatments. “I can see a path so clearly to so many of them. I can rue the fact that it make take a longer time to make some things happen than we choose, or I can be thankful we are focused and determined.”
Moira McCarthy is an acclaimed writer, author and public speaker who has shared her story – and lessons – on raising a child living with type 1 diabetes. Her six books include The Everything Parent’s Guide to Children with Juvenile Diabetes and Raising Teens with Diabetes: A Survival Guide for Parents. McCarthy is a paid contributor for The DX. All opinions contained in this article reflect those of the contributor and interviewees, and not of Sanofi US, its employees, agencies, or affiliates.
© 2016 The DX: The Diabetes Experience