Tag 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 | Posted in Advocacy | Also 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 | Posted in Advocacy | Also tagged , , | Comments (1)

People with Diabetes need a seat at the table– Sign this petition NOW.

September 2, 2013 – 9:54 am

Your help is needed right now– this minute. Take five seconds to go to Change.org and sign a petition urging the U.S. Food and Drug Administration to hold a patient meeting on Diabetes.
 
 
The backstory, from DiaTribe, who is sponsoring the petition:

“The Food and Drug Administration has begun to hold a series of patient meetings to gain a better understanding of specific diseases. Over the next five years, the agency plans to conduct at least 20 such meetings on conditions ranging from Chronic Fatigue Syndrome to Narcolepsy to Irritable Bowel Syndrome.

But not diabetes.

That is unacceptable.

Four “slots” remain open, and we want the FDA to add diabetes to its meeting docket for 2013.”
 
 
It is well known that 26 million Americans are living with diabetes. Nearly 80 million more in my country are at risk of developing diabetes. Despite years, even decades, of advances in care, therapy, drugs, and technology, more people are affected by this disease than ever before.

Not only that… Consider the fact that the federal government was on the hook for over 60 percent of the cost of diabetes last year. In case you’re wondering, the government’s tab amounted to nearly 152 billion dollars. By my definition, that amounts to an epidemic and a fiscal crisis. At the very least, it is proof positive that People With Diabetes need and deserve more attention. Over 3,000 people so far agree with me. Will you be next?

Be one of 5,000 or more to sign the petition. Help People With Diabetes send a clear message to the FDA.

We matter.

We will not be ignored.

Go now, and sign the petition:
http://www.change.org/petitions/us-food-and-drug-administration-sponsor-a-patient-meeting-on-diabetes?q=petition
 
 
 

By StephenS | Posted in Support | Also tagged , , , | Comments (4)

#DBlogWeek – Day Three. Thanks for the memories.

May 15, 2013 – 8:47 am

diabetes-blog-week

We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. This is day three’s post. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

My most memorable diabetes day? I’m not sure if I’m an optimist, really. But I know that I don’t like to dwell on the bad things. So here’s a look at one of my greatest days, with diabetes right in the middle of it. In a good way.

It was just a few months ago. I celebrated my 15 year anniversary at the company where I work. Whenever someone hits a milestone anniversary there, the department gets together and does a thank you, gives a plaque, and then you go back to work.

After more than a few years of ups and downs (mostly downs) between my job and my diabetes, in the last couple years, things had seemed to thaw a bit in the relationship. I’m glad they’ve changed. I’d like to think that I’m a bit less sensitive these days too, and that helps.

Still, I felt a little… nervous about reaching this milestone at work. Kind of like some old demons were left that I couldn’t get rid of. So I was left thinking: how do I take this thing that’s a little uncomfortable, and turn it into something that feels good? I thought about it for some time.

Eventually, I decided on an idea centered around Blue Fridays. Since my anniversary was on a Sunday, I asked everyone to wear blue on the Friday before. I also asked them to make a donation to the Diabetes Community Advocacy Foundation. DCAF is the organization behind the Diabetes Social Media Advocacy website, the DSMA Live and DSMA en Vivo podcasts, and the weekly #DSMA Twitter chat. And Blue Fridays! I talked to my bosses, and they were great about it. I sent an e-mail to my colleagues in Baltimore, New York, and Connecticut, and marked it on my calendar.

And on a cold Friday in February, nearly 20 of my colleagues showed up in three locations wearing blue. They contributed something like 300 dollars to DCAF (sorry, I forgot the final number). I was grateful, I was overwhelmed, and I was thrilled that I was finally able to bring my diabetes to work in a positive way.

How was I able to pull this off? Mostly because of reading others in the Diabetes Online Community and what they were doing. There are so many out there who were, and are, doing such amazing things. Such great things, in fact, that they made me want to do something too.

I know, I’m blowing my own horn here. I’m not really trying to do that. Instead, I’m trying to show that things don’t always have to be uncomfortable and contentious. Sometimes, even if we’re a little afraid to step forward (and I was, at first), when we do despite our fears, good things can happen anyway. It was a feel good day.
 
 
 

By StephenS | Posted in Diabetes Blog Week | Also tagged , , | Comments (4)

World Diabetes Day.

November 14, 2012 – 8:54 am

Today is World Diabetes Day, the day to wear blue, form human circles, exchange postcards, light up monuments, and raise diabetes awareness to a new level, reaching more people than ever before. I’m very excited by that idea.

But what does World Diabetes Day really mean to me? Two years ago, I was completely unaware of Diabetes Awareness Month and World Diabetes Day. So what kind of an impact could it really have for me today? In a word: validation.

Until the last year and a half or so, I lived my life like so many others with our condition. I lived in the shadows of the healthcare system, not aware of anyone else with diabetes. I knew that many were diagnosed each year with Type 1 and Type 2, but I couldn’t connect the dots. I was just trying to survive the quarterly A1c battle, trying not to worry about complications, just hoping that things didn’t get worse.

Like so many others, I was living on this D island where my focus was inward. It was as if I was the only one living with diabetes. I had no concept of a bigger world where People With Diabetes thrive. In my life, there was no concept of newer therapies, updated guidance on nutrition, better drugs, or more information of any kind. And I had completely forgotten about others out there like me. In fact, I didn’t give them much thought unless I read about another celebrity or athlete newly diagnosed. I had resigned myself to the idea that diabetes was my life, it was my problem, I had to deal with it, alone, and no one else really gave a crap about it.

Let me tell you, that’s a lonely place. For some, it’s a really, really, really lonely place. I’ve been spending most of the last year and a half digging myself out of that hole.

I started by doing a Google search for “Diabetes Blogs”, and discovered the Diabetes Online Community. Shortly after that, I read about everything that happens in November and on World Diabetes Day. Slowly, I started to remember that we are a big group. A large group, a humongous group that includes PWDs, their families, healthcare professionals, insurance companies, device manufacturers, and government officials. Instead of living in a D bubble, I started to realize that we are all affected by diabetes. Everyone.

That’s where the validation part comes in. World Diabetes Day is a day to shine a light on our cause. And it’s a way to remind us all that we are not alone. We do not exist in a vacuum. There are 360 million of us living with diabetes, and we deserve to be talked about and written about and spotlighted, even if just for a day. For me, right now, it’s very powerful and uplifting to know that I’m part of a larger group that believes in a better life for all of us cursed by diabetes. I’m proud to stand shoulder to shoulder with everyone fighting for more recognition and a better tomorrow.

I wish that we were a group of none, that we had the cure so many of us long for. But in the absence of that, it’s nice to be reminded that my cause is worth remembering, and worth fighting for.

Here’s hoping your day is full of validation and hope.
 
 
 

By StephenS | Posted in World Diabetes Day | Also tagged , | Comments (1)