Starting a Diabetes Advocacy Group Part 1: First Steps

Posted by tony on Mon, 04/21/2014 - 01:00 in

Tony Cervati, founder of Type1Rider and co-founder of The Blue Heel Society, shares his experiences and advice for getting involved in diabetes advocacy groups, whether as a founder or as a member of a pre-existing organization. Check back later this week for part two.

“Action conquers fear.” – Peter Nivio Zarlenga, author

That Peter Zarlenga quote is one of my all-time favorites and was first taught to me over 25 years ago by a high school English teacher. It is three simple words that I find myself repeating when I am facing an “unfamiliar” situation. In that regard, they were the last words that I said before beginning my 2012 Tour Divide attempt and it’s a theme that I have tried to teach my children.

Sometimes in life an event occurs that alters the current path, summons the soul to action or leaves a quest for elusive answers. The ability to move, act in a positive matter or do something, anything, when facing these things, is the best mechanism for facing fears, getting help and eliminating doubts about it.

If a suitable avenue is not readily available for you through these actions, an obvious choice is to create one.

History of My Diabetes Advocacy Group

Diabetes-Advocacy-Group-Type-1-RiderAbout eight years ago I was working with my endocrinologist to become the first documented person with type 1 diabetes in history to complete a 24-hour mountain bike race as a solo competitor. No one we contacted had ever heard of, nor could the two of us find any information about, a person with type 1 diabetes performing an athletic competition of that duration. The data we craved simply did not exist.

Creating Type1Rider gave me a place to store all of the relevant notes and specific training data points recorded while I prepared for this first race event. I used it much like a simple online diary. We didn't really think about its usefulness to anyone else until the Type1Rider.org URL was paid a visit by a web crawler. Once my site got into the search engine, everything changed. I was beginning to get contacted by other athletes with type 1 diabetes from all over the world who were interested in what I was doing and how I was doing it. The rest, as the saying goes, is history.

Deciding to Start your Own Diabetes Advocacy Group

As mentioned earlier, when you are called to action, there are basically only two paths to take:  join an existing campaign or start your own movement.

If you want to get moving right away, aligning yourself with an organization that is already established gives you an instant platform, usually has no involvement cost, provides access to existing resources and an instant team of like-minded folks to work with. For example, in the diabetes realm, this could mean joining a group like the JDRF, American Diabetes Association or T1D Exchange. There are lots of diabetes charities already working in all sorts of areas that are in need of a range of constant support.

If you are like me, extremely dedicated and passionate about a specific cause, then launching your own organization might be a better alternative. Forging out on your own allows you to raise the points that are of most concern to yourself, gives you the freedom to express your thoughts with less red tape, lets you voice what matters most to your heart about a specific subject matter and, most importantly, gives you the proverbial hammer to hit any nail you see fit.

It takes a strong-willed and determined individual to build a new organization from the ground up, but the rewards are worth the work.

Tips for Getting your Diabetes Advocacy Group Started

When venturing out and starting a new diabetes organization, it can begin many different ways. It might come in a flash and gain momentum very quickly, or, the idea might need to simmer for a bit before the right details fall into place. Type1Rider was created in an instant at 2:00 AM in a dorm room while at a conference, while The Blue Heel Society, another advocacy organization I helped start, took a little longer to work the details out.  There is really no right or wrong way. What is of most importance is to follow your heart, and let your desire help make a difference in the world.

  • Choose your Mission:  One of the main things to take into consideration and flesh out when starting your own organization is what message or mission you are going to promote and pursue. Think of this as your foundation. It sounds very cliché, but the consortium will only be as strong as the base. For example, the footing of Type1Rider is just these four simple words: Awareness, Education, Support, Encouragement. Everything we do at Type1Rider is in support of these goals and they ring loudly at the forefront of all decisions.
  • Set Goals:  To help lay this framework, think about what the goals are of your organization. Are they unique or markedly similar to one or more other groups? If similar, what is it about your new cause that separates it from others? Is that important? Does it break new ground among groups that campaign for the same cause and for the same target audience? As with Type1Rider, is there a void about the topic that needs to be filled? How do you honestly feel about what you are organizing for and what emotions, whether positive or negative, would you like to call attention to? What is it you would like to change?

To establish a society that you are motivated and passionate about seeing succeed, is all about coming up with a mission that represents who you are and how you feel about the chosen topic. It will become a living extension of your being and a speaker to be filled with your voice for the world to hear.

Check back later this week for Part 2 to learn more about starting your own diabetes advocacy group.