Tudiabetes
Using free tools to build a supportive community around a chronic illness
This social network was started two years ago in California by an electrical engineer who had been diagnosed with diabetes but found it hard to get information and practical advice on his condition. Working with the free Ning platform he built a website in less than a month to give diabetes sufferers a forum for exchanging their knowledge and their feelings.
Within days he had 300 members. With user growth of 10% per month, driven mostly by traffic from bloggers and social media, membership now exceeds 9,000 in over 140 countries. This has spawned more than 250 local groups who meet face-to-face. Members recently collected $7,000 to help defray the set-up costs of founder Manny Hernandez and supplement the income from Google Ads. TuDiabetes has become a full time job for Manny and his wife. They have added a sister site in Spanish and thriving fan clubs on YouTube, Facebook and Twitter. In 2009 their plan is to secure sponsorship from makers of insulin pumps and to launch a volunteer programme.
If you are diagnosed with a chronic disease, your doctor can give you the facts, but where can you go for emotional and practical support – especially if the condition is seen by some as unmentionable? This is the dilemma facing many of those who develop diabetes. About 7% of the US population has diabetes, although the figure is nearer to 11% among Hispanics and African-Americans.
Diabetes is a metabolic disorder resulting in abnormally high blood sugar levels due to defects in either ‘insulin secretion’ (Type 1) or ‘insulin action’ (Type 2). Although there is no cure, all forms of diabetes have been treatable since insulin became medically available in 1921 – Type 1 by regular injections of insulin, and Type 2 by a combination of dietary treatment, exercise, medications and insulin supplementation.
Manny Hernandez, a Hispanic electrical engineer and web product manager living in the San Francisco Bay Area, California, had to find all this out in 2002 when, in his early thirties, he was shocked to be diagnosed with Type 2 diabetes.
Manny turned to books and the web to learn more, but it was not until mid-2006 that Manny heard about an ‘insulin pumpers club’, where users of insulin pumps met on a monthly basis to support each other. Manny had been on an insulin pump since July 2005, so he went along to a meeting where he met a number of people with diabetes.
When he told them how his treatment had become less effective since he started to run half-marathons it emerged that Manny actually has Type 1 diabetes and had been misdiagnosed. His fellow patients seemed to know more about his diabetes than the doctors.
In late 2006 Manny was deeply impressed by Thomas Friedman’s book on globalisation The World is Flat’ “It is a phenomenal read. My diagnosis, this book and my work as a person with background working on the web came together to point me to the idea of social networking which had started with sites like MySpace and Facebook.”
The idea of creating a social network for a higher purpose was born. Manny looked for an inexpensive and easy-to-use platform for a discussion area where he and other diabetic Hispanics might share their experiences and practical tips. In March 2007 he discovered Ning, an online platform for creating, customising, and sharing a social network. With this, in the same month, he built and launched TuDiabetes, the world’s first social network about diabetes. In Spanish this signifies ‘your diabetes’; English-speaking visitors took it to mean ‘diabetes too’.
The response to the TuDiabetes launch was electrifying. When three noted diabetes bloggers joined, membership went up to 300 within a few days and they soon acquired their first 1000 users. Since then news of TuDiabetes has continued to spread by word of mouth. TuDiabetes membership has climbed to 7,000 and continues to grow by 10% every month. The main sources of traffic are Google, Twitter and various RSS feeds. Manny is no stranger to the idea of viral marketing. He is ranked in the top 100 reviewers on Amazon.com. “I do it for fun. People soon decide if you are an independent voice that can be trusted.”
In August 2007, Manny launched a sister community, EsTuDiabetes (‘it is your diabetes’) which has become a top destination for people searching online for support and information about diabetes in Spanish. Additionally, a YouTube channel, a thriving fan club on Facebook, a Twitter profile page and a video blog have followed.
In 2008 he started the Diabetes Hands Foundation, still the only non-profit focused on connecting people touched by diabetes (both those with diabetes and their loved ones) and raising diabetes awareness. The burgeoning membership means that Manny and his wife Andreina (Creative Director of the foundation) now work full-time for the initiative and draw a salary. They have set up a board of directors and an advisory board and are currently awaiting 501c3 status, which will make all donations to the foundation tax exempt.
The foundation raises diabetes awareness through a wide range of online outlets. The first diabetes awareness program, ‘Word in Your Hand’, was born within TuDiabetes. This program invites people with diabetes to write a word on their hand that expresses how they feel about diabetes and submit a photo of it. There are weekly prizes for the best submissions. Some entries have included the words: endless, brave, ouch, shame, frustrated, and accepted.
Manny has used Google Ads to generate income from the TuDiabetes site, but the income is not sufficient to cover all operational costs. Members have collected and donated $7,000 to defray costs and Manny is now moving towards sponsorship deals with firms making appliances like insulin pumps. The Word in Your Hand program was licensed by OneTouch, one of the largest makers of blood glucose meters, and it is now part of a cause marketing campaign they are running. For each submission made on diabeteshandprint.com, OneTouch is making a donation of $5 to diabetes charities.
Manny has always been personally engaging with users on the TuDiabetes site, but increasingly he has had to induct volunteers to welcome new members and help with the administration of the community.
“The initiative is simultaneously becoming international and very local. We have more than 140 countries represented in the community. At the same time, there are more than 250 groups, many of which are regional and local in nature, meeting up and connecting members that didn’t know anybody else with diabetes until recently. One of the members is helping quantify the impact we are having, but we frequently hear from new members how thankful they are for the opportunity to learn from others and because they finally do not feel alone in having diabetes.”
The Ning platform is commercially hosted and can support networks of well over 300,000 members, so scalability isn’t a problem. Whilst it isn’t appropriate for people with more bespoke needs or who want to host the network themselves, for Manny it has been the ideal tool. He expects to stay with Ning for the foreseeable future: so much so that he has written the book ‘Ning For Dummies’, published in early 2009.
The plan for 2009 includes the formal launch of a volunteer programme beyond welcoming new joiners, the appointment of regional ambassadors to help develop the roots of the organisation regionally, applying for grants and partnering with teams in academia and other organisations with which we share a common vision.
Manny concludes “there are about two hundred and fifty million diabetics worldwide and seven million new cases every year. I am sure we will be busy helping people connect while raising awareness about diabetes for a very long time to come.”
