Tag Archives: jdrf

Changing faces for a changing landscape.

July 25, 2014 – 12:44 pm

Here are some random thoughts for you to chew on this weekend. I’m not suggesting anything here, just doing kind of a “what if?” riff in my head and spilling it onto this page.

I was thinking yesterday of the change at the top happening at both JDRF and the American Diabetes Association. Both CEOs are stepping down. Jeffrey Brewer has in fact already stepped down from his post at JDRF after four years, replaced by Derek Rapp. And Larry Hausner is leaving as CEO of ADA at the end of the month. No replacement has been named yet.

The American Diabetes Association and JDRF are by far the two largest diabetes organizations in the United States. Sometimes competing, sometimes not, they both look to raise both money and awareness for their cause. In JDRF’s case, “Less Until None” for Type 1 patients. And For ADA, to “Stop Diabetes” of all types, though almost by default, a lot of their mission is geared toward type 2s, who represent the overwhelming majority of diabetes patients worldwide.

I thought about this yesterday, and then thought of other big organizations fighting for recognition, donor money (both governmental and private), and volunteers to aid their missions. Love them or hate them, Susan G. Komen is the face of breast cancer awareness. MDA is the go-to group for Muscular Dystrophy. The American Heart Association is, for us in the States anyway, the reliable resource for all things related to heart health.

Yet I can remember, more than once, asking someone to donate to a JDRF fund raiser and being told “Oh, I already gave to ADA”. And Or vice versa.

Am I suggesting that ADA and JDRF merge their missions into one huge conglomerate of an organization? No. Never.Gonna.Happen. For about a thousand different reasons. JDRF is an international organization, ADA is only U.S.-based is the first. The other reasons are so many and so varied that I don’t really need to repeat them here.

But there are a number of facts that are changing the landscape of the diabetes community. Among them:

– An increasing awareness that the diabetes community has spent way too much time and energy in silos, leading to distance and even animosity between types.

– Recognition of the fact that this is changing, and Type 1 versus Type 2 versus insert-your-type-here is a dead end going nowhere.

– A widening awareness of D-stigma, and a growing desire to squash it like a bug on the windshield of a speeding automobile.

– The growing role of social media in our community, and how, like Moore’s Law itself, it is changing roles, perceptions, the number of contributors, and sources of income faster than ever before.

I wonder if this moment in time represents, in a way, a chance for these two organizations, and the greater diabetes universe, to look at their missions in a new light. How can we work together? What can we learn from each other? And certainly: How can we help patients people today while planning and adapting for the future?

I’m not sure these questions can be answered easily. But I think the best time to ask them may be right now.
 
 
 

By StephenS | Posted in Random Glucose | Also tagged , , , , | Comments (1)

Like these links: Discover, Share, and Donate.

July 18, 2014 – 10:03 am

It’s been a few weeks since I’ve done one of these posts, so let’s check back in and see what’s happening in the Diabetes Community:
 
 
First of all… If you haven’t looked in on the series of Type 1/Type 2 Conversations (or, depending on your perspective, Type 2/Type 1 Conversations) between Laddie Lindahl and Kate Cornell, you’re missing out. There are a lot of things that all People With Diabetes have in common, and we can certainly learn a LOT from each other. So why don’t we? This is a great place to start:

Talking About Weight

Diabetes in the Great Outdoors
 
 
You might have noticed that the International Diabetes Foundation has a new app available that will let you put the universal Blue Circle (I can say it’s universal now, yes?) right on your photo. Sarah Kaye at Sugabetic has a great write-up on it here.
 
 
There is currently some awesome fundraising for JDRF going on, and even though this may seem like overkill, I want to share everything I know about right now. Here are places for you to help support each of your favorite riders, walkers, climbers, and businesses, all raising money for Type 1 research:
 
 
First of all… Did you know that Walgreens is JDRF’s largest corporate partner? Part of the reason for that is the fundraising they’re doing during their annual pin pad campaign this month. Now through the end of the month, shoppers are encouraged to make a donation to JDRF. And they’ll also donate $1 for every registration to their Balance Rewards for healthy choices program through the end of the month. So tell everyone you know, Type One or not. Walgreens has more details here.
 
 
You’ve probably already read about Haley Maurice and her brother (Diabetes Mine wrote about them), who took off down the John Muir trail on July 16th, on a three week hike with an eventual goal to climb the tallest peak in the continental U.S., Mt. Whitney. All to raise money for JDRF. Haley is a 15 year old Type 1 with, you guessed it, an inspiring story to tell. You can read about it all and donate too by starting at summitdiabetes.com.
 
 
Alecia’s Stem Cells are at it again. Alecia writes over at Surface Fine, and she leads a huge walk team in the New York City JDRF walk every year. This year will be no different. She’s always looking for more walkers, and donations never hurt either. Support Alecia’s Stem Cells right here.
 
 
And how about those bikers? I am both jealous of and humbled by people who can train hard enough to cover 100 miles in a day and raise the $2,000 or more that it takes to participate in the JDRF Ride to Cure Diabetes. I think they deserve all the support they can get. Click on the links for more, and support these super riders:

Moira McCarthy Stanford is riding in the Death Valley and LaCrosse rides

Victoria Cumbow is riding in the Lake Tahoe and Nashville rides

Jeff Mather is riding in the Lake Tahoe ride
 
 
Okay, that’s a fairly exhaustive list for a Friday. But there’s always room for more! Have you read something recently that moves you? Inspires you? Makes you laugh out loud? Please leave a link to it below. Have a great weekend!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , , , , , , | Comments (4)

Like these links. Lotsa stuff.

June 4, 2014 – 9:03 am

This being June, there are lots of D-happenings happening over the coming months. These events are always great ways to meet people, compare notes, and learn a lot in a short time. Here goes:
 
 
Taking Control Of Your Diabetes is hosting one of its big conferences in Washington, D.C. this Saturday. It will be an all day affair that includes fitness sessions, screenings, a Type 1 and Type 2 track, and chances to see and interact with Dr. Steve Edelman, founder of TCOYD, Kerri Sparling, former NBA star Dominique Wilkins, and many more. Twenty dollars gets you all of this and lunch if you register before Saturday; if you register at the door, it’ll cost twenty-five. All the information is available here:
http://tcoyd.org/national-conferences/washington-dc-2014.html
 
 
My local JDRF chapter, the Greater Chesapeake and Potomac chapter, is getting ready for its annual meeting on June 26. The meeting this year will take place at the Discovery Communications headquarters at One Discovery Place in Silver Spring, Maryland, just outside of D.C. The guest speaker this year is Moira McCarthy, a tireless advocate, an author, and writer of the popular blog Despite Diabetes. The event is free to all, but you have to register to attend. Find out everything you need to know here:
http://greatercp.jdrf.org/event/jdrf-annual-meeting/
 
 
This isn’t scheduled until next March, but I’m hearing a lot of buzz about the Diabetes UnConference, so you might want to get on board early. Brainchild of Christel Marchand Aprigliano, it’s happening next March 13th through the 15th in Las Vegas. The UnConference is specifically for adults 21 and older living with diabetes of any flavor. What is an UnConference? I don’t think I can do the description justice, so just click over here to find out more and register before everything is booked up and sold out:
http://diabetesunconference.com/details-2/
 
 
That’s it for now. Hope your Wednesday is sunny and warm. And don’t forget about the #DSMA Twitter Chat at 9:00 EDT (US) tonight!
 
 
 

By StephenS | Posted in Like these links | Also tagged , , , , , | Comments (0)

With a little help from our friends.

May 8, 2014 – 10:25 am

DSC00819

How did I get into this? Why did I get into this?

Because I’m a sucker for a good idea and D-Athletes, and I want to support my friends.

Many of you know Victoria Cumbow, who, among other things, is a passionate diabetes blogger and a dedicated bike rider. She’s participated in two JDRF rides in the past two years (hope I got that right), including one in Death Valley. And this year, she’s participating in two more: the Lake Tahoe ride, and her hometown ride in Nashville.

May is National Bike Month, and Nashville has jumped on the bandwagon to designate this Nashville Bike Month too. To kick start both her fitness goals and her fundraising efforts, Victoria has decided to complete a challenge of biking all 31 days in May.

She’s taking photos of her rides this month, and using the hashtag #inthesaddle to share her experiences. She also asked a very pointed question: Who’s with me?

I don’t think there’s any freakin’ way I can bike all 31 days this month. In fact, I know I can’t, partly because of restrictions and admission days for my clinical trial. Also because I missed biking on day 1. If you miss the month-long challenge on day 1, you can’t really make it up.

But I did decide to go halfsies: To support Victoria, I’ll be biking at least 16 days in May. So far, I’ve been #inthesaddle four out of eight days this month. Some days will be on my bike, some days will be on one of the spin bikes at the gym. And one day will be at the Chesapeake Bay Tour de Cure, which is less than ten days away. Shameless plug: You can still support my ride by clicking on the donate button to the left. Thank you.

So far, the challenge has been good for me, helping me to focus on what’s really important (people), how much I like riding a bicycle after all these years, and helping me get into better shape for my big ride a week from Saturday.

Look for the #inthesaddle hashtag. And if you’re on your bike during this month, maybe you can take a photo and post it too. If you want to support Victoria’s JDRF rides this year (she’s raising $6,000 for research toward a cure!), click here to support the Tahoe ride, and click here to support the Nashville ride.

And pray that my legs hold out for 12 more days #inthesaddle this month.
 
 
 

By StephenS | Posted in Athletes With Diabetes, Exercise | Also tagged , , , | Comments (3)

People are talking: #JDRFSummit Part Three.

March 5, 2014 – 9:53 am

Saturday I was one of the many at the extremely well-attended JDRF TypeOneNation DC Research Summit, in suburban Washington. Lots of updates on research all over the diabetes spectrum, and a chance to interact with some of the attendees. Including one I was able to meet for the first time. There was an awful lot packed into one day, so I’ve broken it out into three days of posts. Monday, I covered the morning’s presentations. Yesterday, I covered the afternoon talks. Today, my interactions with summit attendees and a DOC meetup!

——————————————————————–

One of the great things about attending an event like this is being able to interact with others who share some of the same experiences in life. If you’re really lucky, you get to meet someone you know… you know, in a sort of “Hey, there’s a famous person! I read everything they write!” kind of way. I got to meet someone like that on Saturday:

Kelley-Summit

Kelley Kent writes over at Below-Seven.com. I got to meet her and her husband Chris. Kelley has a great story to tell, and she’s a beast of an athlete. In the last year alone she’s completed a 5K run, an 8K run, a 10K run, a 10 miler, a triathlon, and 2 half marathons. All while spending her 20th year living with diabetes. In fact, Kelley is our 9th Champion Athlete With Diabetes medal winner! Look for her story here soon.

You’ll often see Kelley on the Wednesday night #DSMA chats on Twitter, and she’s one of the most friendly and supportive members of the DOC (Diabetes Online Community) that I know of. If you don’t know her, you should reach out. You’ll be happy you did. I really wish that I had spent more time with Kelley and Chris. But that’s my problem, not yours.

There were a couple of conversations I had on Saturday, right at the table where I was sitting. To my right was a person, around Kelley’s age, living with Type 1 and planning a long, 5 day climb this year. Big trip. She expressed some worries about how to maintain a good balance with her BGs while working so hard on the climb. I turned my iPad toward her and pointed at Kelley on my Twitter feed.

“This person here?… This is Kelley. She’s here in the room today. She’s an amazing athlete. She’s completed a number of events in the past year, and I’ll bet she could give you some great advice”.

Then I downshifted into the “there are thousands of D-people online, and there’s always someone who’s gone through what you’re going through who could help you a lot” elevator speech. She quickly wrote down Kelley’s Twitter info and put it in her purse.

See what I did there? I just made the diabetes community bigger. Kelley, I hope she reaches out to you very soon, if she hasn’t already.

To my left Saturday was a family… Mom, Dad, and their daughter, in her early twenties. The daughter was sitting directly to my left. Unfortunately, Dad was a little too eager to give details about his daughter, and how she’s managing her diabetes. He couldn’t seem to understand why it was so hard for her.

I had to remind him that diabetes is always hard, even on the good days. And even if we do everything exactly the way we’re supposed to, we’re just one forgotten bolus, or one bad infusion set away from a high BG. I definitely had the “A1c is just a number, a reference point” discussion. I told him how the important thing is to use what you’ve experienced to help you in the future, but also to concentrate most on doing the best you can from this point forward.

I got a little chance to talk to the daughter. She’s smart, I can tell. There was this amazing handout I picked up at one of the vendor tables that day (I don’t know which one—it was mobbed, so I just grabbed the flyer and moved on). It was put together by Hope Warshaw, and it looks like this:

DSC01405

At one point while we were talking, I pointed at the flyer she had with all of the other things she collected that day. I said, “Do you ever go online and visit any of the places on that handout?”. She had not. Hadn’t heard about any of it. As I looked at her, I could see myself a few years ago, feeling lost, feeling alone, feeling like whatever my life was like then was how it was going to be, and that’s that. Overwhelmed by the diabetesness of it all.

I mentioned some of the places I thought she might find useful, but I also remember telling her that just about anyplace mentioned on that flyer would be a great place to start. I told her to reach out… people will respond and support her, because there isn’t anyone online who hasn’t gone through what she goes through every day. And I told her how the Wednesday night #DSMA chat is often the highlight of my week. Hopefully, I didn’t come off as some sort of old guy nut going on about things she doesn’t care about. I hope she finds a place where she feels like she belongs. I know that place is out there for her in our community.

You know, I think that’s the first time I’ve ever had conversations like that with other PWDs. Every so often, you need to get out from behind your PC or mobile device and sit down with people who understand you, and who can remind you what’s important, and who can help you remember that you’re not the only one out there, and it’s okay to support and encourage. It’s been a cold winter in the Mid-Atlantic. I was glad to have found a bit of warmth on the first day of March.
 
 
 

By StephenS | Posted in Events | Also tagged , , | Comments (2)