Diabetes Advocacy: An Interview with Gina Capone

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Diabetes advocate, Gina Capone, was diagnosed with type 1 diabetes on November 25, 2000 at the age of 25.  Since then she’s been involved in fund raising for the Diabetes Research Institute, founded an online support site for diabetics, and most recently she launched a comprehensive online diabetes directory called The Diabetes Resource.  Gina took the time to tell us about her projects, what she hopes to see in the future of diabetes care, and even a little about herself.  Thank you, Gina!

You’ve been working as a diabetes advocate for some time.  Please tell us about that.  How and when did you start?

I guess I became an advocate right after diagnosis. A few days after I was diagnosed my mom told a friend what had happened to me.  The friend, in turn, told my mom that she just found out someone in her family had been diagnosed with type 1 just two weeks prior. It was her niece who was only nine-years-old.

I met the family of the nine-year-old, who became affiliated with the Diabetes Research Institute right away, and started their own event called The Children’s Best Hope for a Cure. I believe that event raised about $2 million for the DRI over the course of 5 years. I worked on Children’s Best Hope for a Cure with the family and it really helped me to know other people who were living with type 1 and going through the same situation that my family and I were.

We met so many scientists, volunteers and people that worked for the DRI, who have become my extended family. I work hard to help the DRI raise money for research towards a cure, because I believe in what they are doing and I know they really care about us.

What are some of the projects you’ve initiated or been involved with?

I served on the IMPACT (Immediate Priority A Cure Today) committee and the Young Professional division of the DRI from 2001-2004. We had our own events in New York City every year to raise money and I helped with all of the graphic/web design work and worked the event itself.

During that same time I was starting my own online diabetes support site called Diabetes Talkfest, which was one of the first message boards, and has become one of the most popular places to chat with peers and medical professionals online.

When I was trying to get coverage for a continuous glucose monitoring system two years ago, I found that everywhere I read on the internet people who wanted a CGM were being denied by their insurance companies. So instead of just sitting back and letting it happen to me and others, I decided to do something about it. One morning I woke up and decided that I was going to get a petition started and my goal was to get 2000 signatures from July 1- November 14, 2008. I met the goal in 28 days. I now have a site called the CGM Anti-Denial Campaign where you can find tips on how to get coverage for a CGM, and find insurance companies that cover the device and supplies.

In November 2008 I was asked by the Juvenile Diabetes Research Foundation to be the community manager of their new social website Juvenation. I moderate the ethical oversight of Juvenation and its postings, manage the volunteer staff and recruitment of new members, and create relationships with others who are influential in the community, such as bloggers and other online communities. I also help with grassroots outreach efforts for Juvenation using Twitter and Facebook.  I have also been on the JDRF Blogger Round Table, a monthly question and answer feature about blogging and social media related issues regarding diabetes.

Recently I was asked to be on the Artificial Pancreas Project website as a guest blogger, as well to write about my experiences with continuous glucose monitors and my thoughts about the Artificial Pancreas Project.

I am also an expert patient blogger at Health Central.

What is the Diabetes OC? The Diabetes OC stands for The Diabetes Online Community. The site is a collection of diabetes blogs. Every week we contact a blogger from the list and feature them on the homepage. We were featuring a new blogger every week, but, unfortunately, other projects I’m working on have taken precedence. But we are going to revamp the site in the summer or 2010 so stayed tuned for that. The Diabetes OC was originally started by Allison Blass of Lemonade Life.

Your newest venture is the creation of a comprehensive online diabetes directory called The Diabetes Resource: Your ULTIMATE guide for everything diabetes related.  Please tell us more about this.  How does it work?

TheDiabetesResource website came to be out of sheer frustration. When I was first diagnosed almost 10 years ago I was having a really hard time finding what I wanted on the internet. If you do a search for diabetes you will get a list of sites with information that will just scare you to death! If you’re looking for a local support group, information on local events or anything related to diabetes you have to scroll through many, many pages to find something worth reading.

With so many endocrinologists, CDEs (certified diabetes educators), blogs, social media sites, online broadcasts and resources it is just so difficult to scour the web trying to find what you are looking for when you need it most. So I created an all-in-one site where you can find a category for anything you can think of related to every type of diabetes. The beauty of the website is that people can add their own links to any category for free. And if you want to upgrade to a paid listing with more features you can do that, too. If a company wants to add a banner ad, or sponsor pages within the website and newsletter there are also possibilities for that as well.

It must have been a long and complicated process to pool together all of the diabetes resources on the internet.  How did you go about it?

Yes, it was. And it’s an ongoing process. It took a couple of months of planning out how I wanted it to look and feel and also what kind of elements I wanted to be on the site. It definitely caused a lot of sleepless nights because I have major OCD issues. We had a really great group of people who volunteered their time – Landileigh Nelson, Jon Schlaman, Chris Bishop and Karen Graffeo helped out tremendously. Without them helping me I don’t know if there would be more than 10 listings right now. It took about a year to get a good base of listings on the site. Landileigh and I are currently running the website together. Every day we have more things to add in or take out. We now have some exclusive news from Diabetes News Hound and ASweetLife, a Twitter page pooling all of the diabetes tweeters called The Nest, and hysterical weekly cartoons from Haidee S. Merritt. Keep checking thediabetesresource.com because there is always something new popping up!

What are some things you hope to see in the future of diabetes care?

I would like to see better accuracy of blood glucose meters, and doctors who are trained in the emotional aspects of the disease. Since I am trying to get my A1c into a range that would make it safe for me to become pregnant, I would like more literature on the subject, or for the people within my care team to be more educated in a diabetic pregnancy.  I’d like help in setting realistic goals to get my levels into range. I have noticed that anyone you talk to tells you a different A1c number to strive for. My endo tells me 7.0 or below, the CDE tells me 6.5 or below and a obgyn tells me 6.0 or below. Who do you listen to? It is really frustrating as it is, and this makes me feel like I am about to fall over the edge. So, I guess what I am trying to say is that I’d like to see better diabetes education all around that is more consistent all over and more proactive.

Since you live with diabetes and work with diabetes, how do you get a break from it?  What are some of your other interests?  Favorite things to do? Favorite books?  Favorite movies?

Diabetes has seemed to take over every aspect of my life at this point which is good and bad. Good because sometimes all of the education and support I get from the community really helps me to not feel alone, but bad because at times it really takes over every thought in my head and I can get myself into a bit of a mental rut.

I try to take the weekends off from diabetes work, although that rarely happens because you tend to get addicted to all of the social media outlets.

My husband and I really enjoy spending time together going to the movies, watching our favorite TV shows (The Office, 30Rock and Lost!), eating out and hanging out with family and friends. We are looking for a house so that has been taking up our entire weekends. Actually, I should do a blog post on the house hunting process because some interesting stuff happens! haha…

I really enjoy photography as well as drawing, painting and designing logos and graphic design projects. I went to school for fine art & design with a minor in computer graphics and worked in that field for 12 years before I was laid off from my job last year, which is why my main focus has been more on the diabetes side. I do love what I do, and what I enjoy most is when someone emails or IMs me and says “THANK YOU for helping me.” That one email is all encouragement I need to keep on doing what I do!

 

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