The annual Students With Diabetes conference begins today (May 22), bringing nearly 200 young adults to Tampa, Florida, where they can share all about their D-lives at that age.
Now in its fifth year, this is a big moment for the peer and professional network that was founded in 2010 by Nicole Johnson, former Miss America 1999 who's been a vocal diabetes advocate since her type 1 diagnosis in 1993.
Being announced at this year's conference: SWD is expanding beyond just the "college-age," to include a sister program for young adults with diabetes. Both will be housed under the newly-formed non-profit Diabetes Empowerment Foundation.
For Nicole, this has been a longtime vision, finally realized.
"The intention all along was to move these kind of diabetes programs outward, so they could expand. And now that's what we're doing with the Diabetes Empowerment Foundation as the umbrella entity," Nicole told us with pride, just a few days before the SWD conference kicked off.
To date, SWD has been part of the broader Bringing Science Home program housed at the University of South Florida (USF) since mid-2010. Nicole has served as executive director of Bringing Science Home, and that's a role she'll continue. But that program is very research-based, and was never intended to be the long-term entity running Students With Diabetes. In fact, Bringing Science Home was really set up as a research pilot under the generous support of the Patterson Foundation, but not designed to go beyond that into real-life, peer support programs.
"This is all based on grants, so it only runs up through two years and that's the end," Nicole says. "That's a big concern in the diabetes research world overall, and it really limits what we can plan long-term."
SWD started by focusing on students, since Nicole worked at USF within that college community. Through the years, the focus has expanded to the more general "young adults with diabetes" population, and much of their work now stretches beyond just students. The time to grow had arrived.
Enter, this new chapter.
Nicole's partner of SWD, John Swanson, helped establish this new private non-profit foundation and he will serve as executive director. Nicole will be the board chairman.
"With this, I want to incubate programs and migrate them all to be under the Foundation," she said.
We wondered why Students With Diabetes doesn't work more with similar groups like the College Diabetes Network, which seems to overlap in many ways. With CDN teaming up with the American Diabetes Association recently to better serve young adults, and with Nicole's involvement at the national level with JDRF where many of her SWD peeps work as interns, it seems they all fit together nicely. Same goes for other groups like Children With Diabetes that's expanded in recent years to include more young adult and adult PWDs, and the JDRF and ADA have both worked to include more segments of the D-Community in what they do.
Nicole tells us that DEF does not plan to limit the audience it serves, but instead serves a unique need for all life stages.
"We want to look at every stage of life, to address those changes you see from the time you're heading into college until when you are entering that young adulthood and even parenthood and beyond... There are a lot of great programs and organizations out there, but it doesn't seem that anyone's doing that for every stage of life."
Being announced along with this new Foundation ownership is the Young Adults With Diabetes, a sister program to SWD that will expand the support for those who are finished with student life, mostly post-college twenty and thirtysomethings.
While there aren't clear-cut age boundaries, Nicole sees both programs will really encompass the 18 to 40 age range.
"You quickly realize when doing all of this, that it's not just people in college who need support," she said. "Now with this Young Adults With Diabetes sister program, there will be two different options and individuals can choose what's best for them."
Maybe that's diabetes life as it relates to academic issues, internships, setting up social lives and finding a career. But with the new YAWD program, there will also be other focuses like workplace development, mentoring, living on your own, finding a community and even starting a family.
Nicole tells us specific programs offered will include: Just for Partners (of type 1 PWDs), Diabetes Parents (for teens with T1D), and even later this year one for type 1 women who are entering or wish to enter motherhood.
New websites are being set up for both organizations, and will soon go live at:
"We're using a paintbrush to swipe over those younger adult years of life, when you're moving from college into relationships and life beyond school," Nicole said. "And we'll have the support in place for those who are with you for that journey, whether it's parents or friends. Maybe in the future we'll address getting older with diabetes... not sure I'm ready for that one yet! We want to look at every stage of life and offer support."
SWD Conference, Going Strong
Rest assured, Students With Diabetes isn't going anywhere and it won't change much. All of this expansion is really icing on the cake, adding to the already-strong SWD program that exists today, including the annual conference that runs today through Sunday.
Nicole is amazed at how far the conference has come, with nearly 200 expected this year -- compared to the 20 people she was "trying to cobble together to attend" five years ago!
This year's there's an all-star lineup, including D-peep Crystal Bowersox, a country singer who was a finalist on American Idol; fellow type 1 Kyle Cochran who was on two seasons of American Ninja Warrior; and D-Dad Dr. Ed Damiano who will be showing off his latest work on the exciting Bionic Pancreas system.
Nicole also tells us that the broader Diabetes Community can engage with what's happening at the SWD conference through a pretty cool interactive campaign: conference attendees will be able to help Crystal Bowersox write song focused on the difficulties of living with diabetes, using humor to create the expression. All of that will be online Saturday, and including a fundraising aspect in which Crystal will sing the song, and every LIKE will trigger a dollar going to scholarships for next year's SWD conference.
Then on Sunday, Kyle will do a "warrior training" with those attending, focused on stresses and responses and figuring out how to be a leader and use your strengths. There will be community engagement aspect of that happening on Twitter, too.
Congrats on the news, Nicole! We can't wait to hear how the conference goes, and we'll be watching for more program tidbits later in the year.