Why I support JDRF

On Thursday evening, I attended the JDRF Type-1 Adult Meetup in New York City.  It was a great chance to meet some of the friends I’ve made online, but now in real life.  It was also a chance to meet others who I’d not known previously: like the woman who was diagnosed fifty years ago, the mother whose infant son had T1 before she did, and the twentysomething who learned of his insulin-dependence just a few years ago.

To many, JDRF is all about finding a cure.  Or at least it should be about that, they say.  I’ve read and heard the criticisms: that they throw too much support towards the Artificial Pancreas, that they are negligent in not supporting Dr. Faustman’s research, that that they’re a sell-out to big Pharma and big business, and pretty much any other conspiracy theory you can come up with.

I don’t believe it.

Everything about the meet-up (except my photography) was great!
From the pre-T1D-meet DOC Dinner

The folks at JDRF are here to make a difference in PWD’s lives, and their families’ lives, from the moment they are diagnosed.  I believe they are truly committed to the cause they represent.  When a person leaves the hospital with a fresh vial of insulin and a stale pancreas, their doctor gives them a prescription for insulin, a blood glucose meter, and instructions on what to eat and how to inject.  That’s it (in many cases, anyway).  JDRF does the rest – offering advice and guidance (not instructions) on how to live a good life.  They offer encouragement, support, and resources.

When, after thirty years, I finally took part in my first JDRF Walk for a Cure last year, I was overwhelmed by the experience.  The crowd of people walking through campus at the County College of Morris really shocked me.  This crowd wasn’t supporting one of the “high profile” missions like the Susan G. Komen Foundation or the March of Dimes (both worthwhile causes, by the way); they were here to support people like me, and the smaller underappreciated and underpublicized foundation that supports my cause.

That walk was through a wooded campus in semi-rural Randolph, New Jersey.  When I participate in the New York City walk in just over a week, I expect the crowd to be much larger.  My mind can’t grasp how much larger, but my expectations are pretty high.  And despite those expectations, I’m sure what I see will take my breath away (and I’m not referring to the view from the top of the Brooklyn Bridge).

These folks get the word out.  They get people to understand, acknowledge, and appreciate what Type 1 diabetes is all about.  I love that I can walk into any Walgreens Pharmacy, Quick-Chek Convenience store, or certain other retailers and find a wall covered with paper sneakers purchased by people who are concerned about people like me.  It’s encouraging.

For me, at this point in my life, it’s about camaraderie and solidarity.  It’s about the fifty or so people gathered in the 15th floor conference room at 30th and Park.  It’s about the huge turn-outs at walks across the country.  It’s about the local presence in each neighborhood. It’s about the paper sneakers in store windows.  This all tells me what I already knew, but am always glad to be reminded of: that I’m not alone and that someone cares.

Yes, JDRF has paid employees and has expenses that go towards marketing and other administrative costs.  This doesn’t bother me, it’s just an understandable necessity.  Trust me, if I could afford to volunteer all my time towards organizations like JDRF, I would, but with a family to raise and a life to lead, I just can’t.  Neither can those that run the organization; they need a paycheck to sustain themselves as well.  To think that an association as large as JDRF can be run effectively solely by volunteers is, in my opinion, naïve.  And if, by reinvesting a percentage of donations in fundraising, salaries, and administrative costs, they are able to ultimately net a higher number of dollars to the cause, then it’s all good to me.

But it’s not only about the destination; the journey counts too. Perhaps JDRF will ultimately lead us to the Promised Land: a land free of insulin injections, DKA, and midnight hypos.  Or maybe they’re leading us down the wrong path.  Nobody knows for sure.

But I’m stuck on this journey, whether I like it or not.  Having JDRF and its supporters along with me makes it a whole lot easier.

* * *

On Sunday, September 30, my family and I will be participating in the JDRF Walk for a Cure along with Alecia (SurfaceFine) and her team, Alecia’s Stem Cells.  You can sponsor me in my walk here.

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Posted on September 24, 2012, in Diabetes, DOC, Support, Type 1 and tagged , . Bookmark the permalink. 6 Comments.

  1. Scott, nicely put. I feel pretty much the same way. I would only add that it makes sense to check out the funding causes vs. administrative costs balance every so often.
    Thanks

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  2. Scott – Like you said the importance of support from fellow diabetics and their families is immeasurable when fighting a chronic disease like diabetes. The best to you and your family!

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  3. I love this post and am so excited we are all walking together on Sunday!

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  4. Great post, Scott. It almost looks like there are PEOPLE in that picture… LOL! Just kidding – couldn’t resist. 🙂

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  5. Well said Scott. I would love for cure to happen, but we also need to live with this disease until that happens.

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  6. YES to all of this! Hope to see you on Sunday!

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