Manny Hernandez is a well-known member of the diabetes online community (DOC) who was initially misdiagnosed with type 2 diabetes and eventually learned he was living with LADA (Latent Autoimmune Diabetes in Adults). The experiences that followed his diagnosis led him to create TuDiabetes and EsTuDiabetes which are now a part of the Diabetes Hands Foundation. I know there are other diabetes advocates like Manny out there that may be looking to start an organization, so I asked him to share details about his grassroots organization that’s grown quickly.
Q: Can you start by telling us about TuDiabetes and EsTuDiabetes and how you advanced them to what they are today?
A: When my wife Andreina and I started the TuDiabetes social network, we created it for people touched by diabetes, those living with the condition and their loved ones. These people live with the daily economic and emotional realities of life with diabetes, so we created an open space where they could share their experiences.
At first, we started by reaching out to friends, family and anyone who would listen. Then we started reaching out to diabetes bloggers who adopted TuDiabetes whole-heartedly. The growth that the community experienced was very organic, largely through word-of-mouth, turning it into the home for more than 25,000 people touched by diabetes that it is today.
Q: What led you to establish the Diabetes Hands Foundation?
A: Something we’ve done consistently is pay close attention to what the community is talking about and to the ideas that they’re supporting and sharing with each other. One of the ideas we saw on TuDiabetes in July 2007 was a photo posted by a member, a good friend of mine, who did not have diabetes. He wrote a word on his hand (courage) that described how he felt about diabetes and then shared it on TuDiabetes. It was incredibly powerful. We turned that idea into our first program, and asked the community to write a word on their hand that described how they felt about living with diabetes, and share it online. That became the Word in Your Hand program. The initial support we received for the program prompted us to create an organization so that we could bundle everything we were doing with diabetes under one umbrella, the Diabetes Hands Foundation. We started the non-profit in early 2008 with the goal to connect, engage and empower people touched by diabetes. We’re now in our fifth year and have six people on staff including myself!
Q: Where did your initial funding come from and how has that evolved over the years?
A: The first funding we received was the result of the Word in Your Hand Program, which eventually was licensed by a device company. The second year we were able to start bringing in a little bit of revenue off of advertising on TuDiabetes. We also started developing relationships with additional companies that would become sponsors down the line. We expanded our revenue further through fundraising, grants, merchandise sales and contracts with other non-profits.
Q: You now have a number of programs available. Where do the ideas for the programs come from?
A: Well, a lot of times the idea is a direct consequence of really paying attention to what is going on in the community. Even more challenging perhaps, is paying attention to what’s not being talked about and trying to fill that gap.
The Big Blue Test is an example of a successful program that had its start in 2009, when we hit 14,000 registered members between our two online communities. Instead of doing a traditional press release, we asked all 14,000 members to test their blood sugar at the same time. Later we incorporated the notion of exercising after testing, testing again to see the impact, and sharing the experience. Since 2010, the program sponsor has made a $5 donation for each completed test. These donations are then regranted to other groups working with people with diabetes who are in need. Participants get a personal benefit while making donations possible.
We also look around at what other people are doing in the diabetes online community in line with our mission and we ask, “How can we support this?” Asking this question has led to programs like the DHF Seeds program in 2012, sponsored by Sanofi US. The program awards micro-grants to people and non-profit groups who are connecting and engaging those touched by diabetes.
Q: What advice do you have for others who may be interested in establishing a non-profit organization?
A: My first piece of advice is to look at what is being done out there currently. See if there are ways you can partner or contribute to what others are already doing. If the need that you see is not being met or if you feel that what you are doing is very unique, consider getting a fiscal sponsor as an alternative to incorporating as a public charity and pursuing the 501(c)(3) route. Be mindful that there is a significant amount of time that you will have to allocate for administrative matters and fundraising. It is very important to take fundraising into account as a fundamental component of your organization, because if you do not have the funding, you will not be able to keep your doors open.
That’s great advice! It is so impressive to see what Manny and Andreina have been able to accomplish in such a short period of time. Thanks to Manny for taking the time to share these valuable insights.
All the best,
Disclosures: Manny Hernandez received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.
The Diabetes Hands Foundation has received sponsorship funds from Sanofi US Diabetes.