Insulindependence

| Sep 17, 2010

In late July, five teenagers and five adults hiked to the summit of Mount Shavano, one of Colorado's famed 14,000-foot peaks.  For this particular group, the journey to the top of Shavano was designed to be an intensive educational experience on the topic of diabetes management.  Each teenager had type 1 diabetes, and the adults were mentors dedicated to helping the teens feel more in control of the disease. The team made it to the summit by performing countless blood sugar tests, counting carbs, and experimenting with insulin pump basal rates. The outfit behind the expedition was Testing Limits, an outdoor adventure club just for people with diabetes, operated by the non-profit Insulindependence. 

Insulindependence, or "iD," has pioneered the concept of applying experiential education to diabetes management. Peter Nerothin founded iD in 2005 after receiving a small grant from Balance Bar to take a group of diabetic teens on an adventure expedition to Peru. According to the iD website, "expedition participants worked together to learn adaptive diabetes management techniques, build each other's self-confidence, and inspire one another to pursue their life dreams in spite of their chronic condition" over the course of two weeks together.

Since 2005, Insulindependence has developed its innovative philosophy of "experiential diabetes education" through these adventure trips. Nerothin says, "Leaving a place where we feel comfortable is the only chance we have to grow as individuals. This is especially true with diabetes. Life is never static or predictable, and the people who accept this are the ones who are best equipped to face unforeseen challenges." Testing Limits expeditions give people with diabetes a safe opportunity to face challenges and stretch themselves beyond what they think they are capable of.

"It's always made sense to me that people with diabetes are safe when they're around others who share their condition," says Nerothin, adding that iD has established solid safety protocols over the years. "Now I tell parents, ‘Your kids are safer on one of our trips than they are in school.'"

Insulindependence has expanded considerably over the past five years, now organizing multiple sporting events through three other community fitness programs in addition to Testing Limits. Triabetes athletes take on Ironman triathlons while mentoring young "Triabuddies" for the duration of race training. Glucomotive gathers runners and walkers to participate in all sorts of events, from road races to 24-hour relays and ultramarathons. A1Sea, the newest of iD's clubs, is geared toward surfing and other oceanic activities. All the programs are based on the belief that exercise and recreation can be a tool to successfully manage diabetes, rather than an obstacle or something that diabetes is managed in spite of.

Another value that iD promotes is the benefit of interacting with the diabetes community. That's why Nerothin developed Phrendo, an online social network exclusively for members of Insulindependence's four programs. At www.phrendo.com, people involved with Testing Limits, Triabetes, Glucomotive, or A1Sea can create personal profiles that include details such as the dates of their diabetes diagnoses and the types of insulin pumps they use. "Phrends" participate in an ongoing dialogue about living life with diabetes to the fullest, complete with advice on keeping infusion sets in place during open water swims and maintaining steady blood sugars over the course of a marathon. 

Nerothis, iD's President, and Vice President John Moore are the organization's only full-time employees. Both have type 1 diabetes and serve as mentors within iD's programs. With their personal knowledge of life with diabetes, Moore and Nerothin have a clear understanding of how important Insulindependence is, as well as the fact that it fills a very unique role in the diabetes community. Their business is changing lives. "It's addicting, seeing this organization grow," says Nerothin. "The thing that keeps me going is the enormous sense of responsibility to the people we serve."

"I could complete two Ironmans before many of my workdays are done," he adds. "But I see communities coming together around our ideas, and life-changing transformations taking place within individuals.  You can't put a price tag or tomeline on that stuff."

Moore says, "My sole mission is to influence people to make a behavioral change and understand that if they don't, they're going to have [complications]. It's not a scare tactic, it's just the truth. I believe that our services provide an avenue that facilitates the understanding, through experiences, of the suggestions that may be offered by a physician. I don't think telling someone ‘Check your blood sugar 10 times a day' is going to do it... but being involved with them in something and letting them see, ‘Oh this is what it feels like' [to be in control], then they learn for themselves. That's what will inspire a behavioral change, and that's what will encourage them to, as we say, ‘explore their personal capacities' for whatever it is they want to do - it doesn't need to be an Ironman, it doesn't need to be a marathon; it could be playing a violin. Regardless, if you're playing a violin and you have diabetes you need your blood sugar to be in control in order to perform at your best."

Other people are recognizing this, too. Last year, according to Moore, iD doubled its revenue despite not having a single corporate sponsor or substantial donor, and in spite of the dismal economy.  The fact that the organization was "growing in a bad time... was very telling for me; that was really what gave me the confidence [in what we were doing]," he says.

Insulindependence has benefited from the contributions of over 800 volunteers since it first started and has been sustainable due to strong loyalty from everyone who has ever been involved. "We depend on the involvement of all sorts of people within the diabetes community," says Nate Heintzman, who is the Chairman of iD's Board of Directors but does not have type 1 diabetes himself. He says, "More than half of our Board of Directors have diabetes, and many of our volunteer program leaders do, too. But we also welcome the participation and support of committed type 3's (a term we use to describe people like me who don't have diabetes but who really care about it because of our relationships with friends or loved ones with diabetes), who come to our local events to support a spouse or a friend, selflessly volunteer their time and energy, and help to get the word out about iD's cause."

Board members balance their responsibilities to iD, including traveling several times a year to attend events and meetings, with full and demanding personal careers. Heintzman conducts biomedical research and will soon have a faculty position in biomedical informatics at the University of California-San Diego. He says, "I'm a full-time biomedical research scientist at UCSD, and my work with Insulindependence is my full-time passion." Referring to Heintzman, Moore says, "He's probably one of the most philanthropic people I've ever met. He's a game changer."

Elise Zevitz would probably say the same of every single person involved with iD. Zevitz, diagnosed with diabetes at the age of 10, is now a college junior and avid mountaineer. She credits Insulindependence with changing the way she looks at life with diabetes, teaching her to combine her love of mountaineering with diabetes advocacy and inspiring her to be a role model. She says, "I've been type 1 since I was 10, but in the past three years I've learned more about managing diabetes from the people I've met at iD than from any doctor, nurse, or diabetes book in the seven years previously. Everyone has their own experience with diabetes... and iD does a remarkable job encouraging people with diabetes to not only share their story and experience, but to take pride in that story, build upon those experiences, and use it to help inspire others. For the first time in my life, I feel like I have gained something from having diabetes - something I wouldn't have gained before my diagnosis and something no cure will ever replace."

Zevitz is one of those loyal volunteers who keep the wheels of the "iD revolution" turning. She got a firsthand look at the relationships between iD mentors and Triabuddies when she volunteered for Triabetes at the Wisconsin Ironman in 2008, and she has since hosted several fundraisers for Testing Limits.

Moore says, "There are so many stories [of] people that have been involved and made these connections and continued to develop these relationships; it just becomes so much bigger than the program or the race or anything like that - it's about lives, it's about relationships and being friends with these people and just helping them through tough times and to really excel."

Those interested in joining iD or learning more about experiential diabetes education can visit www.insulindependence.org and click on "get involved" at the top of the page. According to Zevitz, "Whether you're a kid in the Triabuddies program, a teen expedition member, or in the ranks of adult runners, hikers, triathletes, surfers, climbers, or cyclists, at Insulindependence, you're both a student and a teacher, and the classroom is diabetes."

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Categories: Adolescent Boys, Adolescent Girls, Blood Sugar, Community, Diabetes, Diabetes, Events, Inspiration, Insulin, Insulin Pumps, Success Stories, Type 1 Issues, Type 2 Issues


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