“What are your hopes and dreams for living well with Type 1 diabetes?” Nicole Johnson asked me, and I was stumped. No one had ever asked me that before. She wasn’t asking just for fun either, she was asking because she wants to gather ideas, requests, wishes, hopes, and dreams so she can take them and present them to the leaders at JDRF, to people who could actually make some of those dreams a reality.
Nicole has been a tireless advocate for people with Type 1 diabetes for more than two decades. Her advocacy started when she was crowned Miss America in 1999 and was the first contestant to wear an insulin pump on stage. Since that time, Nicole has received a doctoral degree in Public Health from the University of South Florida and created and run several programs that investigated the connection between chronic disease, family dynamics, and optimistic living. She served on the board of JDRF for more than twenty years.
Nicole was recently named the “Director of Mission” at JDRF, a newly created role, that will allow her to respond to the diabetes community’s wants and needs. She will conduct market research, and has already interviewed a dozen people with Type 1 diabetes in the last week. She is asking people to define some of their biggest challenges as well as some of their biggest hopes and dreams.
JDRF’s mission has always been to create a world without Type 1 diabetes. They are recognized and celebrated for their commitment to finding a cure and are leaders in funding research. This is important work, and yet they recognize that there are people dealing with the day-to-day challenges of living with Type 1 diabetes who need and want help now.
“The mission of JDRF hasn’t changed, but broadened,” Nicole says. “We want to understand the burden of life with Type 1 diabetes.”
Nicole understands what it means to live with the daily challenges just like the rest of us. She may be a doctor and a beauty queen, but she also deals with trying to balance motherhood, work, and low blood sugars. She also gets frustrated with wearing a pump, and that’s part of the reason why she is the perfect person to take our stories, our hopes, and dreams to the leaders at JDRF.
“We want the diabetes community to know that I’m one set of ears that’s listening. JDRF wants to be a part of their lives in a service commodity.”
Gathering research and speaking to people with diabetes to determine the best ways to support adults with Type 1 diabetes is just one of the tasks Nicole is spearheading. She is also working to develop a fellowship opportunity for psychologists specializing in diabetes.
“We want to add more of these mental health professionals to the workforce to support the emotional and behavioral challenges of living with diabetes,” she says. “The goal is to expand the footprint of JDRF in the behavioral arena.
“JDRF’s mission is expanding to include research, and living well with diabetes.”
That gives me hope.