The Diabetes Hands Foundation is no more, but some of its core programs will stay alive under the umbrella of a young, powerhouse diabetes advocacy organization. In a startling development to many that's certain to shake up the Diabetes Community, the beloved Berkeley, CA-based non-profit that's been around since 2008 and maintained the popular TuDiabetes and EsTuDiabetes online communities is dissolving after nearly a decade. But the DHF's core online platforms -- with millions of users across the globe -- will transfer over to Beyond Type 1, another Northern CA-based org that's just two years old but has been making waves with bold awareness efforts backed by badass celebrity connections.
Official news broke Thursday, coincidentally the day before the big annual American Diabetes Association’s Scientific Sessions conference was set to start. The reasons are largely financial struggles within DHF, we’re told. There have been rumblings about sponsorship and funding challenges for the non-profit for the past several years, especially after founder Manny Hernandez departed and the DHF board later named Gene Kunde as the new director to help bring more non-profit leadership experience to the role. All has not been well, and the other shoe dropped publicly this past week when DHF cancelled its signature happy hour event at ADA that was once widely seen as the “who’s who” networking event in the diabetes advocacy space.
The folks at Beyond Type 1 tell us that conversations about the possibility of them absorbing DHF programs began in May, and in that short time, everything moved rapidly to assure that the TuD and EsTuD communities "would not go dark."
"Unfortunately, due to increasing costs and the competition presented by a growing number of non-profit organizations competing for limited funds, DHF’s Board of Directors has determined that it is in the best interests of its charitable mission to wind up its operations. We understand that the primary impetus was financial in nature,” said BT1’s Chief Operations Officer Thom Sher.
Clearly, it isn't easy being a diabetes non-profit.
Perhaps this serves as another cautionary tale for those in the non-profit sector, who must constantly juggle their mission-driven work with the practicalities of aggressive fundraising. While this is bittersweet news, because DHF has been such a beloved part of our community for the past decade and has touched millions of PWDs' lives, maybe this can also be seen as a new chapter of consolidation in our ever-evolving DOC.
The transition agreement is now sealed, and they expect the formal shift to start occurring next week. Key staffers Mila Ferrer and Mariana Gomez will stay on with BT1, while the rest of the DHF staff including director Gene Kunde and advocacy director Mandy Jones will not move forward with the new org.
"Unfortunately for us this is all happening right when our latest strategic adjustments were starting to confirm that we are on the right track," Kunde told us. "I will spend the next month managing the closing of DHF, and will not move forward with the functions we're spinning off."
It's tough not to shed a tear over this, given the DHF's popularity and the fact that they touched an estimated 20 million people through all of their efforts since inception.
Remember, this all started when Manny Hernandez (living with type 1 LADA himself) created TuDiabetes.org and EsTuDiabetes.org in 2007 with his wife, Andreina. The next year they formed DHF as the parent org for those communities, and launched many more programs over the years including the Diabetes Advocates hub and the MasterLab "advocacy school" to bring aspiring and experienced D-peeps together to learn and share. Notably, DHF spearheaded the Big Blue Test initiative, which since 2010 has motivated the D-Community to get exercise while also raising D-awareness and fundraising for global charitable causes.
It's been a changing foundation since 2015, when TuDiabetes and EsTuDiabetes went through a major platform overhaul and Manny left to work at glucose meter and D-management company Livongo Health, and then D-Advocate and longtime DHF supporter Melissa Lee took over briefly as interim director before Kunde came on board.
Now, with this transition, the advocacy-focused efforts MasterLab and Diabetes Advocates will be discontinued, and the fate of the Big Blue Test and any related World Diabetes Day initiatives remains unclear.
Both TuDiabetes.org (which has 50,000 members) and its Spanish counterpart EsTuDiabetes.org (with 43,000 members) will live on, as part of the Beyond Type 1 portfolio of programs. For the foreseeable future, BT1 says they’ll retain their names and operate the same way they have. The Hispanic and Spanish-speaking part of our D-Community is underserved, BT1 says, and it sees these online hubs as critical in connecting those PWDs.
"The two communities will continue under their current name, but we do recognize that the name of our organization can generate some pause," Sher says. "For us, that's a branding question that we’ll get into when we look to ensuring that, after transition of the two communities, they continue to be a welcome home for all people impacted by diabetes."
He emphasizes that Beyond Type 1 believes the type 2 population is critical to the group's existing mission. Because our community is stronger when united, there must be cohesion and understanding.
"When it comes to diabetes, stigma and many complications do not discriminate by type," he says. "When people living with diabetes are brought together, the result is greater numbers and resources and a louder voice. Communities like these ensure that no one living with diabetes ever feels alone."
New Chapter for 'Badass' Beyond Type 1
Founded in early 2015, we've been impressed with what Beyond Type 1 has accomplished in such a short amount of time -- gaining major traction on social media with campaigns that include raising awareness nationally about DKA, developing an access fund aimed at supporting access-related advocacy in the community, becoming finalists in the Revlon Million Dollar Challenge last year, launching a bike across America event, and even helping get insurance coverage for families in need.
The group's mission is to create "a new brand of philanthropy leveraging the power of social media and technology, changing what it means to live with type 1 diabetes." Its three main goals are: to educate on T1 and the diabetes differences, to advocate on issues that help PWDs achieve everything necessary to live well and without limits, and to support the ongoing work to find a cure.
It's led by two D-Moms: Sarah Lucas, a legendary event planner and fundraising guru who raised millions of dollars for JDRF in the San Francisco Bay Area after her daughter Mary's diagnosis in 1998; and Juliet de Baubigny, a venture capitalist in Silicon Valley whose son Nicolas was diagnosed at age 5 in 2012. Bringing serious glam flair with two T1D co-founders, singer Nick Jonas and celebrity chef Sam Talbot, along with other T1D celebs including actor Victor Garber and pageant star Sierra Sandison, Beyond Type 1 has quickly become a name to be reckoned with in the D-nonprofit space.
Now with this latest DHF transition adding TuDiabetes and EsTuDiabetes to its portfolio, it has even more reach.
BT1 will now have 8 full-time people on its team, as well as 3 part-time employees and a small group of contractors – in addition to the various celebrity supporters.
For his part, DHF founder Manny sees this as a positive evolution, since TuDiabetes and EsTuDiabetes will live on. He made a brief 3.5-minute video about his take on this, which is definitely worth checking out:
We at the 'Mine echo Manny's sentiments, sending a big THANK YOU out to Beyond Type 1!
While we're sad about DHF closing its doors, we are thrilled that Beyond Type 1 was present and ready to take on key parts of the DHF-created awesomeness.
As they say: When one door closes, another one opens… we’re eager to see what BT1 has in store and support them in any way we can.