Thursday, April 11, 2013

Insulindependence: Community of Courage

Insulindependence (IN) is a 501(c)3 public benefit organization created in 2005. IN supports people with diabetes in managing their condition while continuing with the activities they love. With a support community approximately 4,000 strong, IN inspires its members to truly gain independence in their lives. A key component of IN is Triabetes, the world’s largest triathlon club for people with diabetes. I recently had the privilege of speaking with Blair Ryan, IN’s Media & Publications Director, who has been with the organization since 2007. Blair has had type 1 diabetes since 2000, yet is an accomplished collegiate distance runner, triathlete, and cyclist.

What is the mission of Insulindependence?

Insulindependence was founded on the belief that people with diabetes can learn more from each other, in challenging environments with their peers, than in any medical office. We believe that exercise is an important component to managing diabetes. IN allows members to bounce ideas off each other in a community setting. The more we share with each other, the more we can learn how to manage diabetes while living an active lifestyle. IN was founded with the goal of leading outdoor expeditions for youths living with type 1 diabetes. Our first event was a backpacking expedition to Peru, thanks to a small grant. Now we have expanded to serve people of all ages, backgrounds, and skill levels. Each of our programs are based on our core philosophy known as “experiential diabetes education.”

Your website talks about “revolutionizing diabetes management”… what was the old or traditional approach?

Our focus on continuing with the activities you enjoy is the main difference. Many people upon being diagnosed are given discouraging advice. Some are even told they’ll need to greatly reduce what they’re doing, despite the proven health benefits of exercise for people with all types of diabetes. Part of the challenge is it’s really hard when you only have 30 min or so with an endocrinologist. It’s hard to solve every case issue and every specific activity in a 30 min appointment. Exercise does add factors to diabetes management, but it’s nothing that can’t be handled with planning and preparation. We feel that you learn more by doing what you want to do, and adaptively managing your diabetes as you go. It takes time and experience under your belt to manage it well for your activity. This is what’s so great about IN. We have built a community in which we encourage people to share their experiences. This can save years of trial and error by learning from others how to manage diabetes while still being active. No two experiences are exactly the same, but the value of the community is we get a wide variety. If you can pull one bit of advice that works for you, then it’s worth it!

How has IN grown since you started?

We were founded in 2005, and gained official non-profit status in 2008. The vision has grown into more of a public health and social responsibility… just look at the growing number of people with type 2 diabetes (30 million diagnosed in 1985 compared to 285 million in 2010). This year we're piloting a new program called the “Insulindependence Clinical Affiliate Resource Exchange” program (INCARE), in which each IN chapter has volunteers who work to form relationships with medical professionals in their area. By being aware of IN, doctors can refer their patients to us following their appointment. We hope that these professionals will consider IN as a tool that they can use beyond a short appointment with a patient. The free services we provide can make a huge difference in mitigating some of the financial and other costs associated with diabetes.

What is Triabetes, and how does it work?

Triabetes is the world’s largest triathlon club for people with diabetes. It is one of four established clubs with which our members can choose affiliation, along with Outdoor Adventures, Distance Running, and Oceanic Recreation (sailing, surfing, kayaking, etc). Each of our clubs has what we call "captains," who are members that serve in mentorship roles. The Triabetes captains support mentees both in terms of triathlon experience as well as experience with managing diabetes. For example, adrenaline affects people with diabetes differently than others, and the captains help mentees feel confident and prepared for any situation. Being a captain is very rewarding, and we love to see people take on these leadership roles. In Triabetes’ first year of existence (2008) we sent a team of 12 to compete at Ironman Wisconsin. The annual signature event is now Ironman Boulder 70.3. In 2013, signature events for other clubs include Ragnar 24-hour Relays and a backpacking/hiking adventure trip in Montana.

Your website specifies type 1 diabetes in a few places… I’ve read that type 1 comprises only ~10% and type 2 ~90% of all cases. Does IN specify between the two and are the two types managed differently?

The organization began with a focus on type 1, however in both cases, type 1 and type 2, the body has insulin needs that aren’t being met naturally. Our programs provide resources and support for adopting an active lifestyle which is just as beneficial to individuals with type 2 diabetes. Everyone is welcome! 

Can you describe a typical event? What does it entail? 

Let’s take Ironman Boulder 70.3 as an example, the signature club event for Triabetes. We have activities for everyone, whether competing or not. Thursday evening we hold a symposium, in which we have athletes on a panel. Kids and adults alike are welcome to ask questions and learn from these role models as they share their experiences with diabetes. Friday we have an awards dinner at which we recognize individuals who made significant contributions to the program during the year. Saturday is the IronKids race, with lots of support in the form of people cheering as well as individual captains helping the kids with practical triathlon skills such as transitions, etc. The captains and other adults race the next day in the 70.3, with the rest of the community cheering them on. We also have clinical professionals at these events who have referred patients to us. Following the event we encourage everyone to continue to be involved through their local chapter when they return home. We also hope people leave our events with new friends that they stay in touch with and can do activities with where possible. 

Do you see the benefits being more physical or emotional? How has IN helped you personally? 

People come to us with different goals, and we’ve adapted our programs over time to meet various needs. Some people have fitness goals, whether completing an Ironman, racing faster, etc. For these people, learning how to manage their diabetes is most important to them. Others haven’t been able to accept diabetes as part of their identity or have been told they have to discontinue activities because of their condition. With IN they find positive role models that provide more of an emotional benefit. As for me, I was an athlete when diagnosed, which I think was the best thing for my diabetes management, because to run well I had to manage diabetes well. I’ve done an Ironman (Arizona), but if I hadn’t been training with other people with diabetes I wouldn’t have had the same tool box to finish that race. For example, I began using what’s called a continuous glucose monitor (CGM). I hadn’t wanted to use it in the past, but when I saw others benefit from it in training I realized it could help me too. I had this new tool at Ironman thanks to my fellow athletes with type 1. The team that went to Ironman Wisconsin in 2008 gave IN a bit of a reputation of being “hard core.” While we do have people racing Ironman at the elite level, we have something to offer all levels. We have so many people that benefit from less extreme activities, even simply walking. IN is for anyone with diabetes, not just someone who feels inspired to do Ironman. There are lots of little successes… a walker who starts running will have improved insulin sensitivity, better outcomes, blood sugar, etc. These benefits are quantifiable, and there’s also an improved quality of life that’s harder to measure, but may be even more impactful. 

I read about a movie you filmed for “Give it a Shot” films. What’s the background behind this project and how can people access it? 

The project is a collection of profiles that I gathered in 2010 by driving around the country and visiting with all the IN Triabetes captains. I was interested to see how diabetes impacted their lives as they trained for Ironman and mentored youth. The films portray the role diabetes plays in their lives, and how they deal with it successfully. These people are committed to showing the world that exercise is a pillar of their success. If interested, you can check them out at as well as on the Insulindependence YouTube channel. There’s also a documentary that was made about the team that went to Ironman Wisconsin called “The Science of Inspiration.” If interested you can find it in the “store” section of the IN site.

How would a friend and/or reader with diabetes get involved? How can others get involved?

First of all, become a member on the IN website. It is non-exclusive, anyone can join. We stay in touch with our members through frequent publications, and encourage members to join us at events. Members receive free or discounted race entries to many events. We encourage people to also contact their local chapter, which they can support by being on a committee, coordinating events, and helping to form partnerships with the medical community, among other ways. Insulindependence is made possible by our members, and we are very grateful for support at any level!

Below are links to continue to follow and learn about this great organization:

Main site

Lastly, IN will be hosting the next North American Conference on Diabetes and Exercise, “New Frontiers in Diabetes and Sport,” in San Diego, August 16-18, 2013.

Check out this press release for additional details.

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