A few weeks ago, several bloggers were contacted by a representative from an organization called the Juvenile Diabetes Cure Alliance. We visited their website to check them out, but it was slim on information: Who are the people behind this Cure Alliance? It was a big mystery, and some folks were even concerned it could be a scam...
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Turns out that Stoyan Zaimov is one of the people behind the scenes at the JDCA. He's a 23-year-old Bulgarian-born type 1 who has traveled the world as the son of a diplomat, but has settled in New York City. After graduating with a degree in English, Stoyan joined JDCA as the assistant editor of their website and blog.
The JDCA describes themselves as a "paradigm-shifting coalition of donors" who do independent analysis of non-profit organizations that fund diabetes research. They don't support diabetes research themselves, but instead act as a sort of "watchdog" over the organizations that do. Today, Stoyan introduces himself, and explains how he got involved in JDCA and what the organization hopes to accomplish with the help of the diabetes community.
A Guest Post by Stoyan Zaimov
I was healthy, at the time. I exercised, I ate a balanced diet, I played sports — I was feeling pretty good about myself. I couldn't even remember the last time I got sick. I was 18 years old, fresh out of high school, and entirely unable to even imagine that something like diabetes was knocking on the door.
It started on the plane trip to the USA, where I was going for college and the start of an exciting new life. I blamed the airline at first. "What the-- are these small glasses? I am thirsty, give me something human-sized!" and "This air-conditioned air. What kind of chemicals are they pumping into it?! My throat is like the Sahara!"
Except that, of course, it didn't stop there. The thirst continued long after I landed; I was drinking gallons — and peeing them all out within half an hour.
But I was alright, I thought. This was a temporary glitch in the system — something to do with New York's humidity? I would get over this. If not, "I'm sure the doctor will just give me a pill or something, and I'll be fine"...
But I was not fine. I found myself in the hospital. I had just been given the lowdown on diabetes, insulin, hyperglycemia, pancreas, carbohydrates, blood tests... I understood the basics, but no one was answering the one important question. I could handle anything, only as long as I knew when I would be A-OK again. "In a week? I'm hoping not more than two — I have things to do. Let me double-check with the doctor, he should know..."
I have, I hope, grown a lot in the 5 years since my diagnosis as a fairly clueless 18-year-old. I know now that feeling invincible about anything in life, let alone your health, is not a wise way to be.
What has not changed, and what I have not given up, is my outrage when I was told this is a chronic disease. That I will have to take insulin shots and measure my blood for the rest of my life. That there is no cure, and no one has any idea when, or if, one will ever be available.
I refused to accept that diagnosis, and to live a life devoid of hope that a way out is possible. I hunted through the internet, and found a lot of reading material — but none of it offered that impulse I was looking for. None of it gave me an idea of what a cure would be like, or any possible time-frame for when it would be available. "Hope" and "cure" were words I often came across, but nothing that I read made me feel any better than that day in the hospital when the doctor said there is no cure and no one knows if there ever will be one.
Then I found something different. It was through a job posting looking for an associate editor, and I wanted to see what this "Juvenile Diabetes Cure Alliance" was all about. After reading their beliefs page, and looking through their reports — I knew that this was something I wanted to get involved with.
The JDCA is a unique non-profit organization: they are not a scientific group, and they do not accept donations of any kind. They are an independent researcher, and gather information on the biggest diabetes foundations out there (such as the ADA, DRIF, JDRF and Joslin). They publish free reports on how these organizations are allocating their resources, how much money is going directly for a cure, and other important questions. Their mission is to provide the diabetes community with the information needed to make informed choices about donating, and maximize the chances for finding a cure for diabetes.
I currently work at the JDCA as an associate editor, where I maintain the daily-updated blog [ed. note: our sister site, DiabeticConnect.com, is featured on the JDCA blog!], and reach out to the diabetes community and tell people what we are about. I also interview diabetes bloggers and get their thoughts on where we are in our search for a cure, and ask them to share their experiences with diabetes. It is remarkable to me how many people I have gotten to talk to already — from fellow type 1 diabetics, to mothers and fathers of children with type 1, and some of the most prominent diabetes advocates and authors.
I did not know it, but this sense of community was really what I had been missing. The JDCA has a motto: to be "The Voice of the Donor for a Cure," and I encourage everyone to be a part of this voice. We are working hard to build a platform for action, so that everyone can have their voices heard, and let the foundations know where we want the money to be used.
Please visit our website, where you will find a detailed FAQ section about how we are structured, our beliefs, hopes, our plan of action, and how you can get involved and become part of the Alliance.
The stronger we grow as a community, the more united our search for a cure becomes, the closer we will get to a day when one will be available. We are in this together.
Editors' Note: Although we don't necessarily agree with everything the JDCA publishes in their reports (i.e. that a cure from stem cells is a myth, or that a cure by 2025 is a realistic goal), we are certainly interested in hearing what members of the diabetes community have to say about the organizations that serve us. Check 'em out — then make your own decision!