We've long been big fans of Nicole Johnson, winner of the 1999 Miss America contest who's now also legendary in the Diabetes Community for her volunteer advocacy efforts, authoring several diabetes books, and the creation of organizations and programs like Bringing Diabetes Home, Students With Diabetes and most recently the Diabetes Empowerment Foundation.
Beyond her pageant fame, she's one of us, a compatriot who fully "gets it" when it comes to living with type 1 diabetes, diagnosed herself during her college years in 1993.
Now, Nicole has taken a full-time position as National Director of Mission for the JDRF, an organization she's been volunteering for since the early days following her diagnosis. In this newly-created position, she will serve under Chief Mission Officer Dr. Aaron Kowalski, whose team aims to "broaden our programs that affect people's lives in the day-to-day," he tells us. Fun fact: 4 of the 5 people on this team live with T1D themselves.
Not surprisingly, Nicole has hit the ground running -- in her first weeks on the job, she's already kickstarted a new JDRF program to train young psychologists to better assist people with diabetes.
“It’s an exciting time,” Nicole says. “The JDRF is giving me the ability to explore, on their behalf, what we can do to help people right now. Honestly, it’s pretty inspiring to be turning this page. It’s good for all of us that there’s this insistance in trying to make good things happen for people.”
Nicole's T1D Journey
Nicole recalls that in the early 90s, she landed in the hospital for five days before being sent home with a new label of "type 1 diabetic" and all kinds of new information. She says that just a few days later, she walked into her local JDRF office – wanting to get involved despite having just a tiny bit of diabetes experience under her belt. Within the first few weeks, she joined a gala organizing committee and began branching out from there.
Keep in mind, this was a time when the online world didn’t exist as it does now. For newly-diagnosed Nicole, it was all about finding local community, and that’s what she discovered with the JDRF.
In the years since, Nicole has become a fixture in the national diabetes community – from volunteer roles within three chapters and on the international board of directors for JDRF, to founding Bringing Science Home and Students With Diabetes, and the Diabetes Empowerment Foundation in 2015. She’s also led statewide initiatives in Florida funded by the CDC related to pre-diabetes and infant mortality, and it’s hard to overlook that Nicole – a legit, degree-holding MD herself – also starred as a dLife TV host and won a Telly award for her diabetes journalism work.
On Joining JDRF
“I’ve been a part of so many (advocacy) communities over the past 24 years, and each one is so special, but there’s something so unique about going back to where it all started,” Nicole says. “It brings up all the feelings of when you were in your most helpless moment, here’s where you turned and got help… and now, I think, 'What more could’ve been done for me at that time? What can we provide to the newly diagnosed now?' Those are the questions I’m asking myself, as we determine where we go next with JDRF.”
Specifically, she’ll be focused on strengthening the JDRF’s psychosocial and behavioral health programs. While a lot is still being mapped out, there are two specific areas already in the works:
Psychosocial Tracks: JDRF will weave a psychosocial tract into its TypeOne Nation summits around the country. While individual chapters often craft their own events and do include behavioral health, this would be a national push with recommendations on specific topics and potential speakers. That’s already in development and much of the content will be rolled out in 2018.
Training New Psychologists: JDRF will be supporting a Psychology Fellow program, in which young, next-gen mental health professionals will be specifically trained to help those with diabetes. The org will begin to recruit psychologists for that in the coming week, Nicole tells us. They don’t yet know how many new fellows they can accommodate per year, but JDRF has made a firm commitment to growing this program.
“We are going to really wrap our arms around this concept of adding to the professional diabetes workforce, and adding to it in a way that’s really meaningful,” Nicole says. “This is a great opportunity to teach these bright young minds what they need to care for people with diabetes, and hopefully inspire them to stick with diabetes in their career choice.”
Nicole points that she spearheaded this type of fellows’ training many years ago with Bringing Science Home, which involved training 10 psychologists, who’ve since gone on to take that diabetes-specific know-how into their own practices. Yet nothing like it has been done elsewhere. In this new JDRF program, she expects there will be regular collaboration and coordination with other groups such as the American Diabetes Association and American Psychology Association, which have also been interested in this idea – from training psychologists to creating a diabetes-focused psychology directory in particular.
Her new position allows her to stay in Florida with her family and work remotely from a home office (she got a new landline just for this new role!). She’ll also be traveling nationally to events and JDRF summits and to the org’s headquarters in New York, as needed.
Collaboration, and 'A Friend in JDRF'
How will this all play with the other organizations she's involved in and founded?
Although she established the Diabetes Empowerment Foundation, which now oversees the Students With Diabetes program, Nicole says she hasn’t been involved in the day-to-day implementation of late. Also, SWD has partnered with the JDRF through the years, so Nicole doesn’t see a conflict but rather a natural evolution in how everyone collaborates and works together.
“Everything I do here in this (new JDRF) role should be an enhancement for the Diabetes Community, and not a duplication of what already exists,” Nicole tells us. “We’re going to look for ways to enhance the family atmosphere and our connectedness that we have in diabetes, because we can do so much more.”
Right now, Nicole says she’s focused on writing and program planning, as well as doing market research on what JDRF can do better. “What do people want? What do they need, and what needs to be refreshed?... This is about talking and listening to people, for community-based solutions,” she says.
Nicole hopes the D-Community sees this as “having another friend in the JDRF front office,” with a passion for helping them.
In the weeks and months ahead, there may be opportunities for Twitter chats and online forums to connect with her, but she also encourages folks to reach out to her directly at firstname.lastname@example.org.
She knows there will be a lot of trial and error, in testing out new ideas that the Diabetes Community suggests, and then working to make them better.
“There's this rich, deep commitment to do what you can for others, because we’re all fighting the same battle and are in this together. The organization is trying to show they care about the lived experience, and about quality of life with diabetes… that’s one of my main charges.”
From our side here at the 'Mine, we’re very excited to see Nicole join the JDRF in this capacity, especially serving the adult D-Community, so we no longer feel as forgotten as we once did. This adds to the momentum in helping people in the here and now, and we’re glad to see it grow -- as we eventually move closer to a cure, someday.