Dinner in D.C.

The local DOC Contingent sure pulled together while we were in D.C. for JDRF Government Day.

What started out as a group of nine or ten quickly turned into sixteen or more! Every time I checked my e-mail or twitter feed, there was another person who caught wind of our plans and wanted to join in.  I had no idea so many of these folks lived close enough to meet us for dinner!

Chris and Dayle helped out BIG TIME in choosing a place to go and making (constantly changing) arrangements. We went to a place called Chevy’s, which was right across the street from where our hotel shuttle dropped us off and would pick us up later.

Picture from the far end of the dinner table

Picture stolen from Allison

I finally got to meet Miriam Tucker (I’m a huge fan).  I got to see Allison again (we share a strong “no drama” vibe).  I met Sarah (any friend of Kim‘s is a friend of mine). I met Lindsay (who totally shares a brain with Kerri, what’s not to love?), And possibly the highlight of my trip?  Getting to meet KEVIN (I am terribly jealous of his awesome beard)!!

Picture of the d-blogger table - near end

Picture stolen from Kerri

I need to talk about Kevin for a minute.  Kevin has been “off the grid” for more than two years. His blog, parenthetic (diabetic),  is best described as a dormant volcano.  Tons of raw power that you have to respect – never knowing when it might erupt into life and start spewing top-notch blog posts again.

Even being absent for so long, when I introduced him to others around the table, four out of five knew of his blog and the great stories it holds.  Plus – he bikes everywhere! I mean every. Where.  In fact, for dinner, his bicycle was locked up to a post just outside the window.

I wanted to invite it in to sit with us!  Heck – I bet Kevin could have sat on his bike, balancing no-handed, the whole time.  A beer in one hand, and a tortilla chip in the other – with his helmet and bike jacket balanced on his lap.  I don’t know.  I just think people who bike when it’s cold out are badass.  That, and his beard is awesome.

So many friends, so many laughs.  Plenty of Diet Sodapop.  Chris even managed to work some magic that allowed us to stay in the restaurant well past closing hour!

It was the perfect way to spend an evening.

JDRF Government Day Whirlwind

Picture of Scott with Gary Hall Jr.The first session I went to was called “Government Relations 101”. Sounded perfect to me – as I had no clue what I was getting into. Kim and I sat next to each other and listened to a great, high level, presentation about the JDRF and Government Relations.

At some point during the talk, Gary Hall Jr. was mentioned.  Yeah, 10 time Olympic Medalist Gary Hall Jr.! Everyone looked over to the left, and there he was – sitting but a row in front and a couple of seats over from us!

After the session was over, Kim and I went to chat with him.  He was so down to earth, and there advocating just like the rest of us.  He wasn’t big bad superstar Gary – he was just Gary, a guy with type 1 diabetes doing whatever he could to help make a difference.

Image of Scott's Dexcom CGM with crazy highs, and a sudden dropBy the time that session was over, it was around 5:00 PM on day 1.  I had only slept about tw0 or three hours before leaving Minneapolis, and the short sleep was really starting to mess with my blood sugars.  Even though I had been throwing bunches of insulin at my highs, they just wouldn’t budge.  Until all of a sudden they did–scared the crap out of me–then went back to being high again.

I have a theory about the lack of sleep and my blood sugars running high.  When I don’t get enough sleep, my body is stressed out trying to keep up with my activities – so it’s likely pumping out all kinds of stuff that make me more insulin resistant than normal.  That’s my story, and I’m sticking with it until I learn differently.

The next morning started off way too early, again, but I was quickly drawn into the action.  We were in a huge ballroom lined with tables.  There must have been at least 150 of us in there.  Each and every person took a minute to stand up with a microphone and share their story about why they were there.  It was pretty damn moving.  Lots of laughs, and twice as many tears.

Later that afternoon was the blogger round table discussion.  There were two groups presenting, splitting the audience into two equal-sized groups to make open discussion a bit easier.  I presented with Kelly Kunik, Kim Vlasnik, Kerri Sparling, and Cherise Shockley.  The other group was Scott Strange, Allison Blass, Mike Hoskins, and Kelly Rawlings.

They did a live broadcast of our group on UStream (recording below), allowing many more people to tune in.  With all of the questions, both from the people in attendance and from people watching the broadcast, we could have used the entire afternoon.  It was too bad we couldn’t get to all of them.  I would also love to see a recording of the other group – rumor is that it was recorded and will be online soon.

Lorraine, Jeanne, Scott, Kerri - Type 1 Talk presentationAfter the roundtable session, Kerri and I were asked to help introduce a new tool the JDRF has made available.  Type 1 Talk is a brand new Facebook app that allows you to connect with other people touched by type 1 diabetes who are nearby.  You can use this tool to see if there are any local groups nearby or to organize a get together for coffee with like-minded people.  You’ll hear more about this soon, as I think the JDRF folks are pretty excited about it.

Aside from being introduced as “Steve” (it’s Ok Lorraine – I forgive you, but will not pass up an opportunity to poke fun in a blog post…), it was a pleasure to share the stage with Kerri again.

In the evening we had dinner and listened to a speech by Jeffrey Brewer, President & CEO of JDRF.  I had a front row seat and was excited to get a feel for Mr. Brewer.  In short, I felt his initial presentation was a little too “canned” or scripted.  But I think if he would have slowed his delivery down just a little, it would have been fine.

He was much more relaxed in the Q&A section of the dinner, and that allowed his passion and personality to shine through.   He gets it.  He talked about his feeling that many of us adults have fallen away from the organization because we’re not being shown all of the good work the JDRF is doing en route to a cure.  We hear “cure, cure, cure”, but as we all know, there isn’t one yet.  So we feel as if there’s nothing happening, that it’s the same old messages over and over again, then we move on, sometimes with (in my opinion) hostility towards the JDRF.

Mr. Brewer wants to welcome willing adults with type 1 back into the fold.  He wants to do a better job of including us in things they are doing, and he wants to do a better job of sharing all of the great things the JDRF is doing as it is working towards a cure.

For example, did you know that the JDRF spent $10 Million dollars to fund a study on CGM use?  It was a study that might have been viewed as a common sense thing – of course, CGM use should improve diabetes management, right? But there were no studies done to prove it, so insurance companies were not covering CGM devices as widely as many thought they should.  JDRF stepped up to the plate to fund this study, which provided data which was then used to push for better insurance coverage for CGM devices.  That was $10 Million dollars that nobody else would spend because it seemed like such a no-brainer!  Why fund a study that most would call common sense?  I thank the JDRF for the insurance coverage I have for my CGM sensors.  If they had not funded that study, who knows where we would be with CGM devices and insurance coverage.

Take that example a step further – do you know of any CGM systems that are labeled and approved for use by children? As far as I know, as of today, there are NONE approved for those under the age of 18. How dare we adults feel like the JDRF isn’t doing anything for us?

Later that night, five of us d-bloggers made history.  A live, sweatabetes workout session at 11:00 PM!  It was pretty awesome!  I taught everyone how to do a Turkish-GetUp.  Ginger would have been so proud!  After about 40 minutes of working out, many of our blood-sugars were dropping.  So we made a group decision to head downstairs and have ice-cream, where we met up with the rest of the slackers and made them feel really bad about not working out.

After ice cream, I was coerced into demonstrating a Turkish-GetUp for those that missed the live sweatabetes session.  So I did one.  Using a jar of glucose tabs instead of a weight.  On the floor of the bar.

I know, crazy right?  It’s all Ginger’s fault.

Next post about this? Dinner in D.C. – taking over Chevy’s, with pitchers of diet soooooodaaaaapop (imagine a thick Minnesotan accent…)

2011 JDRF Government Day Takeaways

Picture of the MN JDRF crew on Capitol Hill

Shelley, Debbie, Scott, Camile, Ann

Did you know there is a whole section of JDRF that deals with Government Relations?  Me either – at least not until this trip.

When I think JDRF, I always think about fundraising and walks, stuff like that.  I didn’t think about people keeping an eye on government stuff.

It makes sense though, if you think about it.  There are many decisions made on Capitol Hill that directly impact us, positively or negatively, in our daily lives with type 1 diabetes.

Partnerships

As I learned more about the many things the JDRF is, and has been, involved in, I was impressed by the scope of their vision.  Beyond government relations, the JDRF is actively involved with the NIH (and many others), together funding a number of important studies.

We listened to a great presentation given by Judith E. Fradkin, M.D., Director of Diabetes, NIDDK, NIH (that’s a mouthful!) and Richard Insel, M.D., Cheif Scientific Officer, JDRF, about some of the active partnerships and how the NIH & JDRF research is making progress at all stages of type 1 diabetes (preventing onset of autoimmunity, stopping active autoimmune attack, preserving beta cells, improving glucose control, restoring beta cell function, and dealing with complications).

If you’re looking for hard data here, numbers and figures, I’m the wrong guy.  But just for kicks I’ll throw out a really complicated phrase from one of the slides:

JDRF and NIH Research: How Does the Microbiome Confer Immunoregulation and Alter T1D Susceptibility?

I have no idea what that means.

I found an old report on the NIH website from back in 2005 and a new video with Dr. Judy Fradkin from the NIH that was taken at this years JDRF Government Day event.   They are totally unrelated to each other, but does show that NIH & JDRF were working closely together back in 2005, and they are still working closely together today.  You can tell from her video, Dr. Fradkin (who still sees patients, by the way) is excited and engaged with us.

Back to advocacy

After spending two days learning about some of what the JDRF is doing, who they are working with, and what the messages for our representatives were, we went out to our representative’s offices to ask for their support.

I got to hang out with the group from Minnesota, and watch them in action.  They were a blast to be with, and once we got into those representative’s offices, they handled their business – on behalf of all of us living with diabetes.

I don’t think us average folk out here appreciate the gravity of some of the things being advocated for.  For example, what do you think will happen if the FDA’s budget is cut?  We already think they are slow, right?  Imagine if they had less people and fewer resources?  Wouldn’t that slow things down even more?

These things all feel so far away from us, and they are, I guess.  But it doesn’t take long for some of these decisions to affect our lives.

They Have NO Clue

We didn’t get to meet with any actual members on The Hill.  We met with aids from different areas of their offices.  While I was very impressed with them in general, most of them didn’t know the first thing about life with diabetes.  It’s terrifying to think about the power of a signature when they are so disconnected from what we deal with on a daily basis.

With that in mind, it is our job to educate them and let them know where we need their support, and how a decision will help or hurt us.

Some People Enjoy Government

I do not enjoy government stuff.  While the atmosphere around all of the old buildings is pretty cool, I found the inside of the two buildings I saw to be very boring and sort of sterile.  If it weren’t for the company of the Minnesota JDRF gals, I wouldn’t have enjoyed it much at all.

But stepping back from the event a bit, this work is necessary.  Critical even.

These politicians are a different breed to me, and it’s weird to watch them be interested in what we have to say – but only because it’s their job.  I think about how many different groups come in each day to pitch their story, and whether any of these people think about us after their work day is over.  Did we make an impression?  Or were we just another group of activists?

Would I Do It Again?

Of the four days I spent in D.C., two of them were a lot of fun, and two of them were a lot of work.

The fun days were listening to the presentations, learning about everything that the JDRF is involved in, and getting to know some of the other volunteers who work so hard for us.

The not-so-fun days were the two days spent on The Hill. They were exhausting, and not much fun at all (except for hanging out with the MN gals). We ran from meeting to meeting to meeting, with lots of waiting in between.

These trips are hard for me, taking time away from my family, not being able to work on stuff that actually helps pay the rent, and dealing with out-of-pocket expenses that, while often reimbursed, still have to come out of the “rent and groceries fund” for a while.

But if I have the pleasure of being invited back again next year, I will enjoy the two days of fun, and proudly sacrifice two days on The Hill to help educate and advocate.

It’s the least I can do.

**Disclosure: JDRF paid for my food, travel, and lodging.  They did not place any expectations or restrictions on my writing about the trip, and have no editorial control of what I write about it.

Thank You, JDRF!

A quick, post-trip vlog post that I recorded last night after getting home from the airport.

I know that I look half asleep already, and I’m probably even slurring my words a little bit… but I wanted to get a quick “thank you” out to the JDRF and everyone else I met these past few days.

More to come after I get caught up on my rest!

2011 JDRF Government Day

Logo for JDRF Government DayI am excited to have received an invitation from the JDRF Grassroots Advocacy group to join them for the 2011 JDRF Government Day event, starting this afternoon in Washington, D.C.

The event actually lasts four days, and is a mix of updates, information, advocacy training, and meeting with representatives from Congress.  Their goals for this event are to grow the JDRF network and to support and advance the broader diabetes community (as Mike Kondratick, Director, JDRF Grassroots Advocacy, recently stated).

This year, they’ve invited some of us from the Diabetes Online Community to join them and share our perspectives on the advocacy needs of the diabetes community and talk about ways we can all work together to achieve them.  Nine of us are volunteering our time and energy to attend this event and see what it’s all about.

In addition to all of the regular ‘Government Day’ activities, the JDRF is hosting a blogger round table session, where we will be talking with, and taking questions from over 150 volunteers from across the country.  We are splitting into two groups to make discussion more feasible.

By chance, I got into the session that will be broadcast on the JDRF USTREAM channel.  Tune in on Sunday, March 13, at 2:15 PM EST to see the session.

There is a twitter ‘hashtag’, #JDRFGovDay, that will be used to round up tweets that happen throughout the event.  I’ll try to get some tweets sent too, but not at the expense of missing stuff happening right in front of me.  You can also keep an eye on the JDRF Advocacy Facebook page, which will have updates posted throughout the event.

To round things off, one of the best posts I’ve read about the upcoming event is from Scott Strange.  I think he did a great job of keeping all of this in perspective when he said:

This new outreach is still in its infancy and is a totally new mission for many chapters.  True mentoring programs were few and far between you might find a program to “mentor” people on how to help with fund-raising but not find one on how to help to cope with the day-to-day of diabetes.  Previously, Adult T1’s were viewed as either a volunteer, a donor, or a fund-raiser.

Like many things in life, this is about a new relationship, and it’s a new relationship that has, for some people, a fair amount of old baggage to deal with.  Me?  I’m excited that they are interested in doing more, and I’m happy to help all parties involved in any way I can.

In addition to all of this new relationship stuff, I’ll be able to catch most of their normal ‘Government Day’ meetings and sessions.  As someone who has always been a bit intimidated by politics,  this will be good exposure for me.

I fly out early in the morning, and with any luck I’ll be somewhere overairplane flying Wisconsin or Illinois when this post is published.  I even have the pleasure of meeting the above mentioned Scott Strange for breakfast in Chicago, then sharing a flight with him to D.C.   I hope that he behaves himself once we’re on the plane – I don’t want to be the one blogging about how an air marshal put him in a submission hold at 20,000 feet in the air…

** Disclosure: The JDRF is paying for my travel, lodging, and a few meals.  The JDRF has not placed any restrictions (or expectations) on what I blog about, and they have no editorial control before or after the event.  While I’m honored to have been invited, I also want people to recognize that this sort of thing is expensive for me in terms of time, energy, opportunity cost, and some out of pocket money.   Travel is never completely free.