One thing you can’t deny about our Diabetes Community is that there are a lot of passionate people working hard to help make this world a better place for those of us with faulty pancreases.
And many of those efforts have been crystallized over the past several months in a wave of new diabetes non-profit orgs.
Sure, the PWD-led diabetes non-profit world already seems pretty crowded (exact numbers are hard to come by, as they’re not registered in any central place). But a couple dozen spring to mind immediately… ranging from huge national advocacy outfits to smaller groups facilitating community connections to research and treatment focus, diabetes camps and local programs, general diabetes education and so on. In this sense, we are blessed.
Since August 2013, four new diabetes non-profits have been formed by groups that may already sound familiar to you. What’s new is that they’ve each established (or are inches from establishing) official 501(c)3 non-profit status, meaning they become tax-exempt philanthropic organizations — governed by a board of directors and dedicated to a charitable cause.
Here’s a brief rundown of the backstory on the four groups we’re talking about:
CWD Goes Independent Again
The announcement came Dec. 6 that after nearly six years as part of Johnson & Johnson, the beloved organization we know as Children With Diabetes was independent again, now in the format of an Ohio-based nonprofit. D-Dad Jeff Hitchcock, whose daughter Marissa was diagnosed at age 2, founded CWD in June 1995 as a way to help his family connect with others living with type.
“The mission of CWD is and always has been to provide education and support to families living with type 1 diabetes,” Jeff tells us. “How we organized in past years was a function of how we were able to raise money to deliver on that mission. Much has changed in terms of funding sources, and it makes much more sense now to be organized as a non-profit.”
Since forming as an online forum for families in 1995, CWD hosted its irst Friends For Life conference in Florida in 2000 and that’s of course grown to include thousands of families each summer. That big annual FFL conference remains a top priority, Jeff says, and now they also conduct a number of smaller FFL conferences and seminars around the country throughout the year. And don’t forget the inspiring Quilt For Life that’s been growing larger for more than a decade now! The CWD Foundation is currently staffed by Jeff in Ohio and D-Mom Laura Billetdeaux in Michigan, but he says they’re exploring future needs to ensure that the website and conferences can continue reaching as many people as possible.
diaTribe, the Foundation
In November, we heard the news that our friend and well-respected analyst Kelly Close had turned her company’s diaTribe publication into a non-profit, appropriately named The diaTribe Foundation. The focus mirrors our own at the ‘Mine: “improving the lives of people affected by diabetes and prediabetes, and advocating for action.” Born in 2006 as a self-funded eight-page quarterly newsletter on the latest research and product news, diaTribe‘s been publishing 24+ pages each month since 2010.
From a diaTribe reader survey, the impact for our community’s been incredible: 95% said diaTribe helped them learn more about diabetes research and product news; 82% thought the content helped them have better informed conversations with health care providers; 64% believed it helped them improve their D-management; and 42% even said it helped improve their A1C. Nice!
Kelly wrote in a column recently that creating the new foundation will “allow us to raise funds and to add more resources to improve the publication. As the Foundation grows, we will explore new programs that will help people with diabetes and prediabetes achieve happier and healthier lives.”
Can’t wait to hear what’s next for diaTribe!
(btw, we’re very grateful for diaTribe‘s recent coverage of our DiabetesMine Innovation Summit.)
Oh, So Sweet: Diabetes Media Foundation
In December, our friends Jessica Apple and her husband, Michael, incorporated their online magazine, A Sweet Life, and related projects into a new non-profit based in New York, called Diabetes Media Foundation. Their focus: “disseminating information about, and generating community around, living a healthy life with diabetes. DMF helps people living with or affected by diabetes find information, community, and support from one another, and to share their stories.”
Jess tells us that they didn’t know much about the non-profit world when they started A Sweet Life back in 2009, and had they known more, they might have kicked off as that type of organization to begin with. She says people have responded well to their work online written not only by the PWD husband-and-wife team, but by their expanding number of additional writers including Karmel Allison and Catherine Price. “We’ve helped people, and nothing is more rewarding than that,” Jess says.
Now with non-profit status, Jess sees they’re “really in their element,” and is now creating a few new online programs. The first, launched Feb. 1, is their new Digital Diabetes Library that will feature books “created by people with diabetes for people with diabetes, they tell stories that come right from the heart.” We’ve written a lot ourselves about the value of having so many new D-authors and books in this community, so it’s great to add to the lineup of places to find them!
Being fellow diabetes journalists, we’re excited to see how the new D-Media Foundation grows.
Glu that Binds (or Unites)…
You may remember the post we shared in early November about a new non-profit called Unitio, launched as the new umbrella organization presiding over the T1DExchange national type 1 registry and its MyGlu online social network platform. Of course, Glu and the Registry began back in 2010 with grant funding from the Leona M. and Harry B. Helsmley Charitable Trust, and so it was nice to see those efforts coming together under a self-sustaining non-profit all on its own.
Unitio is a unique new model focusing on tapping patient communities to speed research and development of new treatments. In their own words, the org is working “to create a real-world, patient data platform designed to accelerate all aspects of drug and device development via an integrated system of people and institutions already working hard to decode different parts of complex diseases.” That’s a mouthful, but we love what they’re getting at.
DCAF — Not the Coffee Kind
We know and love the weekly Twitter chat called #DSMA (officially known as Diabetes Social Media Advocacy), founded by PWD Cherise Shockley almost four years ago, and that’s now grown into a trio of Blogtalk radio programs including DSMA Live on Thursday nights; a D-parents’ show every other Monday; and DSMA en Vivo for the Latino community on Tuesdays. Not to mention the DSMA Blog Carnivals each month and the Blue Fridays initiative that Cherise created to raise awareness among the general public.
Cherise announced her plan to become a non-profit in mid-2012, with the new organization called the Diabetes Community Advocacy Foundation (DCAF). She officially filed for that designation in February 2013, and is awaiting federal government (i.e. IRS) sign-off any time now.
“When I started DSMA in 2010, I did not expect it to grow or impact the community in ways that it has,” Cherise tells us. “I was a 30-year-old who had an ‘Aha Moment’… We are in the process of structuring the organization and evaluating processes and programs, s when we do receive our 501(c)3 status we’ll be ready to focus on DCAF’s mission, vision and community.”
Right now, Cherise says the group’s expenses are paid for by her out-of-pocket and by some generous donors among the D-Community. Non-profit status will help increase DCAF’s reach beyond the online community so they can do more offline, she says.
There’s a lot on tap for 2014 and beyond, Cherise tells us: DCAF has been partnering with Diabetes Sisters, another 501(c)3 nonprofit aimed at helping women with any type of diabetes. A joint meetup was held last year at their Weekend for Women conference, and the same is planned for Chicago, LA, and Washington D.C. conferences this year.
Also, Cherise hopes that Roche Diabetes will continue supporting the DSMA Live meetups that were held in conjunction with last year’s ADA Scientific Sessions in Chicago and the AADE conference in Philly, which each brought out about 80 people for a local gathering. There’s also a plan to once again host the World Diabetes Day Twitter chat, which united 530 participants and hit 10.2 million impressions last year (!). Oh, and since WDD is on a BLUE FRIDAY (another DCAF-led awareness campaign) for 2014… just think about all the advocacy greatness possibilities!
Cherise also has plans for new program that will use Google Hangouts to enable face-to-face interactions by video… and hint: it may be called DCAF Talk! The hope is to put that in place by the end of 2014, and Cherise is looking forward to working with other grassroots orgs and local communities in all of her DCAF activities.
The Nonprofit Experience
To get some insider insight into the challenges these fledgling orgs face, we reached out to our friend and fellow D-Advocate Manny Hernandez, who founded the non-profit Diabetes Hands Foundation in 2008. He’s seen a significant growth of diabetes non-profits in the past five or six years, particularly as social media has helped amplify the patient voice and community connectivity.
“The energy and passion in the diabetes community is increasing every year, and 2013-2014 feels like this momentum is particularly picking up,” he said. “You can feel it when you look around and see the amount of creativity, and new nonprofit groups emerging or re-emerging (as in the case of CWD that became nonprofit again).”
Of course, with all the new energy comes the “clutter” of having so many in the non-profit space, and larger diabetes orgs with bigger budgets can sometimes drown out what others are doing.
“This has made it more challenging than before to effectively use social media as an outreach channel, something that used to be very cost-effective, during the ‘early days’ of this space,” Manny said, adding that it requires efforts to be more targeted and strategic now. “People are starting to feel overwhelmed with the amount of information they are getting via social media.”
Manny says it’s great to see all these efforts, but he knows from experience that it’s not an easy path to take and the inherent obligations of running a non-profit are something to think about before diving in with both feet.
He recommends people do their homework first and make sure there’s a definite need for what would be offered, and that the nonprofit model’s the right way to provide those services. One alternative choice to going for an independent 501c3 designation is the notion of a fiscal sponsorship, essentially a nonprofit host organization that can help with some of the “back-office” aspects like payroll, benefits, tax returns, and federal or state regulation compliance.
Despite all the administrative headaches of going non-profit, Manny says the reward for him is in the people who benefit from these communities: “This morning I was recalling a beautiful image from a member on TuDiabetes who described how it was for him, when he saw the community reacting in support of someone needing help. He equated it to white blood cells rushing to the site of an infection to help.”
As to other advice for new or emerging non-profits, Manny’s written an informative blog post that offers some insights based on his experiences. Worth checking out!
It’s fascinating to see the evolution of our diabetes community — connecting, learning, sharing, and advocating in so many different ways.
We know that at the recent Medtronic Diabetes Forum, there was a full half-day devoted to communing on the future of advocacy, and we can all use our online efforts to create real-world impact. The immediate result was a focus on the Spare A Rose campaign, to bypass spending on fancy Valentine’s gifts and route that money instead to PWDs suffering in Third World countries.
But of course for each advocacy group or campaign, funding’s a big part of the puzzle, and when there are so many small non-profits asking the same industry and larger organizations for support, some may struggle to get what they need — such as we saw recently with our friends at the Behavioral Diabetes Institute. We want to confirm that BDI is still around and hasn’t completely shut its doors, but it’s had to cut much of the programming planned for 2014 and is still struggling to find its financial footing. Which is surprising, considering the incredible need for what they do!
There’s a definite need for all of these programs, and they’re doing great work — and as a result more PWDs are learning about these orgs and efforts. So how can we help assure that they’re sustainable?
What seemed to come out of the conversations at the Medtronic event (and previous similar advocates’ forums) is that to make these programs self-sufficient, it ultimately comes down to us PWDs. Each individual can help share the good word about what is being done, and volunteer their time if and when possible.
As Cherise said during the Sanofi-sponsored Partners In Patient Health event last October, those of us in the DOC can be “foot soldiers” to help communicate with the rest of the D-Community.
We can start right now by adding our thoughts to a virtual brainstorm being led by advocate Bennet Dunlap at his blog YDMV. And we second the call by Kim Vlasnik to please “use your resources and connections to further the work being done by diabetes advocates.”
In the end, it comes down to us helping each other, in order to help those who need help the most… That’s what makes us a community, right?