Hi, My name is Jamie, and I am new here, found my way here via a link on Facebook. Two years ago at the ripe age of only six years old, my cousins son (My "Little Buddy") was diagnosed with Type 1Diabetes, in was in and out of the hospital a lot those first few weeks, I had never been so worried in my life. There is a good reason Nathan is my "Little Buddy" from the time he could walk, Nathan has never been far from me during family get together's. He is doing well now, he is eight plays soccer, and t-ball and involved in the boy scouts. As I said in my subject line, I have never been so passionate about something as I am about JDRF and the work they do. I love finding new ways to learn about this Foundation.
Hi Jamie, Great post. I have found the JDRF to be very helpful. What we also need to do as advocates is to ensure that those with Type 1 diabetes have a secure and healthy future. Until there is a cure, T1D is expensive for one's entire life. We must advocate for our health care policies to ensure both access and high quality care for life. The closest analogy I know of, and have observed directly, is the sort of comprehensive care provided to veterans via our VA medical network. If we had this type of lifelong support for those with T1D, then our kids would have a chance to breathe more freely and pursue their dreams.
Boston...are you FROM Boston? I wish i was close by. I'm keeping an eye on The Faustman Lab out of Mass General. http://www.faustmanlab.org/index.html. I think Dr. Faustman's research is the equivalent of The Golden Ticket.
To your point, I also believe JDRF is a helpful resource. However...and I mean no disrespect...JDRF is bound to its sponsors. Some of its sponsors could not possibly benefit by a cure being found for type 1 diabetes and actually might be very HURT by a cure. It troubles me that JDRF would partner with any company that did not share JDRF's purpose for being...that is, to find a CURE for type 1 diabetes.
To add to that, true scientists -- those committed to research and development of a cure for diseases like type 1 diabetes -- are scientists, not PR peoeple. If their research doesn't stand to make big money for a big pharmaceuticals company, the cost of conducting phased clincial trials is often contingent on private donations and fundraising. They don't have in-house ad agencies to generate buzz.
I am thankful for JDRF. When I was a kid, they were in the halls of Congress fighting for me. As an adult, however, I am responsible to be my own advocate ... to educate myself about research going on all over the globe, big or small, and to help get the word out to those who might be relying too heavily on established advocacy groups for info about type 1 diabetes research. If more people knew about the Faustman Lab research, for example, maybe there would be more money available to fund the Phase 2 trials.
That's what I think "advocacy" has to mean to us now. Unfortunately, the closer we get to a cure, the more resistance we may get from those we've previously considered our allies.