Category Archives: Advocacy

One thing at a time.

October 18, 2013 – 9:10 am

Great #DSMA Twitter Chat this past Wednesday night. There was lots of discussion about things we can, or should, do offline in addition to our online activities. Well, what can we do?

What can we do to help others living with and affected by diabetes? The Diabetes Online Community is great, but not everyone knows about our wonderful little fast lane on the information superhighway. How do they find out? And how do we make a difference for others outside of our online cocoon? Oddly, it’s often offline that people learn about online information, support, and understanding. And it’s certainly where many grass roots efforts make real differences for those in need. For me, that’s where connecting with people has made a huge difference. But in the abstract, it can seem overwhelming. When you break it down into little bites (or bytes), however, it’s not so big at all. Let me explain:

You see, when I think about it in general terms, I have trouble believing that I’ve made any impact at all offline. Yet, when I consider single, one-at-a-time events in my life recently…

– At a JDRF meeting nearly a year and a half ago, I saw a presentation that led me to connect with others, that has led to participation in one clinical trial, and hopefully another before the end of the year, that have the potential to help others living with diabetes.

– A blog post after superstorm Sandy compelled me to send extra durable medical supplies to people in need in New York.

– Thinking about my 15th anniversary at work this year inspired me to do some fundraising and #bluefridays support.

– Talking to my endocrinologist about my writing here has led her to give information about my blog to a few patients who, I hope, have connected beyond this page to a larger world of support and enlightenment.

– Going to in-person support group meetings, though rare, has allowed me to share what I’ve learned and discovered, online and offline, with people who have suffered burnout, stress, problems with insurance, and issues with understanding medical technology.

– And offline meetings like this one and this one and this one have helped me recharge my D-batteries, learn things I didn’t know before, and thaw my feelings toward my fellow man and woman in ways that I didn’t think was still possible.

Listen… I’ve only been at this blogging thing for a year and a half. I only discovered the DOC two years ago myself. I’m still a relative newbie at this thing. All of the things you see above are little things, small increments of change in my life that did not happen all at once. They happened because I thought, “Hey, why not? I can’t do everything, but I can do this one thing.”

My message here is: One thing at a time. Then one thing more. Then one thing more. You don’t have to invent something all on your own. None of the things I mentioned above were original ideas. They were things I saw that others were doing, and I thought I could maybe do them too. Eventually it became a body of support and advocacy that looks like I did a lot all at once, when it was really just one small thing at a time.

That’s how movements happen. It’s how the stone gets moved. That’s how small things become big things, and how big things become a groundswell, a steamroller that makes our lives meaningful and overwhelms indifference and apathy.

”You must be the change you wish to see in the world”—Mahatma Ghandi

Who are you, and what is your one thing?
 
 
 

By StephenS | Tagged , , | Comments (0)

Asking Congress for renewal of the Special Diabetes Program.

September 13, 2013 – 9:43 am

I’m meeting with my congressman on Monday morning as part of a larger group sponsored by JDRF to ask for renewal of the Special Diabetes Program here in the USA.

The SDP is funded at 150 million dollars per year. Current funding is in place through September 2014, one year from now.

You might think, “Wow, 150 million? That’s a lot of money”. Actually, it isn’t. Want to know what a lot of money really is?

– The annual cost of diabetes to the American economy is 245 billion dollars. 2-4-5 Billion.

– Nearly one third of the annual Medicare budget for older Americans is spent on People With Diabetes.

On the other hand, the $150 million spent on the Special Diabetes Program has helped to kick start and then continue research toward advanced drugs and therapies, better technology, and yes, research toward a cure for diabetes. Artificial Pancreas research and development has been helped along by the SDP, and it’s a game-changer for all PWDs if we (ourselves and Congress) help to get it across the finish line to approval and practical application. Advances in eye care and BG management have also become a reality thanks to the SDP.

Since the program is funded for the next year, why should we worry about getting renewal now? Because researchers have to plan and schedule clinical trials and other elements of their research and development well in advance. If they don’t know what will happen with regard to the Special Diabetes Program, they may hesitate before starting critical phases of their trials. Or they may delay starting trials at all. As you know, every minute we delay is another minute we have to wait for the next breakthrough in therapy, drugs, or signs toward a cure. We shouldn’t have to wait. Just ask a parent who is caring for their child with diabetes. They’ll tell you: We’ve been waiting long enough.

If you have the opportunity, help JDRF advocate for continued funding of the Special Diabetes Program. More information is available about the SDP by clicking here.
You can read more about JDRF initiatives and start getting involved yourself by clicking here.
 
 
 

By StephenS | Tagged , , , | Comments (1)