Guest Post: Bridging The Gap ~

I walked in the door late last night from my trip to LA & the Medtronic Diabetes Advocate Forum/#medtronicDAF. I have boatloads to share - FYI, be on the look out for the Medtronic press release & Carelink being MAC compatible any second (like as in this week) now!

But unfortunately, yours truly has a full day of work & a full inbox, so my post won't be up until tomorrow! Lucky for you (and me) Cherise Shockley, brain child of the Wenseday night twitter chat #DSMA (diabetes social media advocacy,) Blog radio co-host of DSMA Live, Continuing The Conversation, and all around fantastical member of the DOC, was kind enough to write a wonderful guest post about what she learned at (#jdrfgovday) JDRF's Government Day. Thanks & TAKE IT AWAY, CHERISE!

######## Thank you Twin (Kelly) for asking me to guest post today. I am not sure what I am going to write about because I am currently having issues with sitting at the computer to blog about things happening in my life. Sad, I know?!?!

A few weeks ago, I had the opportunity to attend the JDRF Government Day with a few other diabetes/patient bloggers and huge diabetes advocates in social media. I was honored and blessed to be surrounded by family that felt the same passion for advocating for diabetes and for the people who live with it, young or old and Type didn'tt matter.

We discussed a lot of different issues. I learned a lot about advocating not only for people living with diabetes but I learned a lot about advocating for the technology and the science needed to help make our lives easier.

I learned that the Juvenile Diabetes Research Foundation is a great organization that started off as a huge support system for children living with diabetes and their parents but ended up being “cure” focused and lost track of the children as they grew up.

I also learned, that the JDRF is making an effort to go back to their roots but with an added twist-see, not only will JDRF focus on support for children but also for adults and still continue to find ways to help us live with diabetes, some day prevent it and waaaaaaaaaaaaaaaaaaayyyyyyyyyyyyyy down the line if the good Lord’s willing, a Cure.

I also learned that Parents of children with diabetes are NOISE MAKERS when it comes to diabetes. I learned that they have a big heart and mean well but when it comes to their children, they do not play and do not take no for an answer! They ROCKED Capitol Hill with their stories and children’s stories-some were heart breaking, empowering and uplifting. I saw and heard a lot of the parents speak about their kids being burnout, hated diabetes, didn’t let diabetes stop them or some lived with diabetes a lone and felt comfortable doing it!

I also learned that parents cry a lot and they want to stop this disease but at the same time find ways to help them live with it. Sounds a lot like the Diabetes Online Community? Doesn’t it?

I was glad to hear the JDRF and ADA work together on a few government related issues, meet and shake hands with a lot of people that understood diabetes, eat cupcakes, sit on an awesome panel, hang out with my family, get lost on the Metro, sit next to an awesome Pilot and flight attendants and most importantly represent the Diabetes Online Community.

I believe Jeffery Brewer and the JDRF staff will try their best to bridge the gap between children, teens and adults living with diabetes.

We have to be patient and figure out how to jump in and lend a hand. We complain about the past. Let’s help fix the problem. Let’s be a part of the solution for the future.

Be Blessed,

Cherise

The JDRF Government Day Chronicles Continue.....

So when we last left off, I was walking into the cocktail hour with a type 3 dad. As I walked in the ballroom,whom should I meet, but the Fabulous Princess & The Pump herself, Princess SweetPea.

Can I just tell you, how much the Princess ROCKS!

Not only is she cute and styling (that can girl can accessorize like no ones business) but also she’s as smart as a whip!! SHe and I had a great conversation and we giggled, A LOT.

I talked with the Princess & her family for a while and thanks to Hallie (Diabetes Blogger & The Princess's mom), who took this great shot of the Princess & I!

Me, Princess Sweetpea & A Pink Bear~

Then I mingled some more, and before I knew it, it was time for dinner.

I sat with Kerri and Scott. We enjoyed the meal (and the butter) and listened to the keynote speakers.

And that’s when the whole room had the opportunity to hear Jeffrey Brewer, New President & CEO of The JDRF speak.

Ans Jeff’s speech was good - formal, but good nonetheless.

He gets what living with diabetes is like, because his 16-year-old son has diabetes.

He knows about not sleeping through the night, and about worrying 24X7. He knows about living with a teenager with diabetes and the challenges that brings, and that life with a teenager is a whole different diabetes ball game.

He understands the importance that technology plays in dealing with diabetes – and his working very hard for not just a cure, but to make the latest and greatest technology readily available to those of us living with diabetes.

He talked of the CGM study funded by the JDRF – Scottie J goes into great detail about the JDRF CGM funded study, HERE.

I love that Jeffrey realizes that adults with diabetes need a place to go – And I appreciate any person and organization that will give an adult living with type 1 diabetes a place to go. Because whether Diabetes burnout/feelings of loneliness hits you at 7, 18, or 40, when it does, you need the support of people who are dealing with the same diabetes frustrations that you are.

I know there was a blowout re: his diatribe interview, and you all know my thoughts on what happened after it was printed.

I really appreciate the fact that Jeffrey Brewer allowed those of us in the room to get up on the mic and speak our minds.

And the majority of the folks were really positive.

But I really felt like an adult type 1 needed to speak, so I did. When it was my turn, I said something like: Hi, my name is Kelly Kunik, and I used to be a warm fuzzy child with diabetes and now I’m a warm and fuzzy adult with diabetes (for 33 years now) and I blog about living with diabetes. Thanks for welcoming us back to your family table.

I told them my family history and I think I said something along the lines of: We’re all part of the same diabetes family, and some families don’t agree on everything, but because we're family, we have each others back. I believe we need to sit at our family table and give thanks. I know my mother wishes that my sister could be here to blow out the candles on her birthday cake. But she can’t because she died from type 1 diabetes in her early 30’s. Had she had some a diabetes community to support her, I think she'd still be here. So thanks again for welcoming us back, we really appreciate it!

After dinner, Jeff came up to me and thanked me for sharing and said - and I’m paraphrasing here: I really appreciate you telling your story. It really helped explain to others to see how important embracing the adult community is.

The next morning, we had another session re: Strides in research, possible causes of type 1 diabetes, The Special Diabetes Program, the artificial pancreas project - The information presented was mind blowing!

PLEASE call your State Reps & tell then to continue funding for Diabetes!

Then the Bloggers had a sit down with Jeffery Brewer, and nothing was off limits!

In that meeting Jeff really opened up and got personal –And we had a great dialogue.

He stated right off the bat that: Diabetes is persuasive and all consuming and undermining in the quality of life. We spend so much time thinking about it, that sometimes technology tools actually make living with diabetes more difficult. It eats up more of your life.

But he also said that while diabetes technology is overwhelming at times, it’s critical that we have and use those technological tools!

Yep, he understood diabetes burnout from being connected 24x7 AND realized that we needed to work through the burnout and continue to embrace the diabetes technology just the same. Impressive.

He talked about adolescence being the perfect storm for bad diabetes management and he & his family were currently living right in the eye of that storm.

Jeff agreed that every branch of JDRF needs to have "consistent messaging in the organization across the board.” Meaning that if NYC branch of JDRF offers an outreach program for adults living with type 1, so should the North Dakota branch.

Jeff closed by saying: We need to make sure we have the bond with the people we have supporting and living with the disease - Were not moving away from anyone, were embracing everyone.

And that is a WONDERFUL thing~

Jeffrye Brewer & Some of "The Bloggers"

Next time on the JDRF Government Day Chronicles: A Cupcake dinner & Kelly Hits The Hill Hard!

Disclosure: The JDRF paid for my travel, some of my meals and expenses. I wasn't asked to blog about my experience, nor did they tell me what I could or couldn't say. Like it or not, what I wrote and will continue to write are my thoughts, from my own diabetesalicious brain.

JDRF's Government Day: The First 24 hrs

JDRF Government Day Blogger Round Table Discussion/Panel

My trek to JDRF's Government Day in DC started with me finding a seat on the Acela train from Philadelphia to our nation’s capital – And unbeknownst to me, the seat I found was on the quiet car.

For those of you who aren’t aware, the quiet care is just that – QUIET. No loud noises, no voices that carry, and no fun allowed. On the way home from a long day, the quiet car is OK, but on the way to a destination on a journey longer than 1.5 hours, the quiet car is maddening!

My train was delayed ½ way to DC by a 190-car freight train pile up. We waited over an hour while engineers on the track checked each of the 190 cars on the freight train to make sure everything was OK.

Kerri over at SUM seemed to be having a similar train frustrations and via twitter, we agreed to meet- up at The Crumbs Bakeshop @ Union Station & share a cab to the hotel in Arlington.

Around 3ish, we met up at CRUMBS, grabbed some cupcakes (including a carrot cc for Cherise, who had been dreaming of CRUMBS all week) and finally found our way to the cab stable, and grabbed our “confessional cab” (keep in mind, neither of us had actually talked to anyone we knew for HOURS) for the 20 minute ride to Arlington.

We met up with the other bloggers in the bar, spent a good amount of time hugging one another and then we each made our way to our rooms & got dressed for the Awards dinner.

That night we went to the Awards /cocktail hour & dinner honoring JDRF Advocates from around the county who spend massive amounts of time and effort planning, coordinating, & executing JDRF fundraising efforts in their communities. The majority are volunteer & almost all have are directly related to diabetes via a family member.

The Bloggers sat together, and that’s where I had the chance to finally meet Hallie from The Princess & The Pump – And you know what? She’s WONDERFUL.

The next morning began with a 7 am breakfast (and yes,daylight savings time had just kicked in about 5 hours earlier) immediately followed by sessions on JDRF Government Relations.

Before the sessions officially started, every person in the room got up and told their diabetes story, and I have be honest, listening to everyones stories made me cry.

OK, it made more than cry, I damn near sobbed. But listening to those stories reinforced the fact that diabetes touches everyone, not just those who have diabetes. I sat in a ballroom filled with parents, grandparents, and siblings of type 1’s. And there were many adults with type 1 as well. Every story made me cry, some made laugh, and each inspired me to continue advocating.

The sessions that followed the introductions were all about having successful Hill visits.

Now, for those of you who don’t know, JDRF hit’s the lawmakers on Capital Hill for a solid two days every year regarding Diabetes. As in living with diabetes & funding for Diabetes research. This year The JDRF was asking lawmakers for their continued support on diabetes based research & technology.

With the economy being the way it is, The House wants to make cuts (BIG CUTS,) to the tune of 1.6 billion in NIH funding & 241 million cuts to the FDA. These cuts directly affect diabetes research, BIG TIME. I'm asking you - regardless of what side of the fence your on, to call your lawmakers up and tell them you won't support them if they support these cuts!

This year, JDRF was asking the the politicians in each state to sign a letter to FDA Commissioner Hamburg supporting The Artificial Pancreas Project and taking it to the next step- Out of the clinical setting and into a real life clinical trial settings.

Diabetes is a technology based disease, and if we can't get the funding for the technology, and can’t get the technology pushed through the inertia that is the FDA, we pay the price as PWDs (people with diabetes), both literally and figuratively with our health.

The Blogger Panel P.O.V: About 7 minutes before we began!

Please forgive the photo layout - Blogger does strange things!

After Lunch, the Blogger Roundtable discussion took place – And it was honor to be a part of such a wonderful group. I really felt that talking about growing up with diabetes/living with diabetes as an adult, helped the parents in the room get a different perspective of things – And vice versa.

I know that every blogger in each of the roundtable discussions felt that we were representing the DOC and we wanted to make you guys proud!

I was in group 1 and I have to say, our audience really got into the discussion, as did the folks watching on ustream!

After the Roundtable discussion, I went up to my room and freshened up before dinner.

As I walked back to meet the bloggers, I saw Cherise and I said: Hey, I’m looking for you!

And a man who was walking slightly askew to her left said: I’ve been looking for you too!

Me: Me? Excuse me?

Man: Yeah, I’ve been looking for you – I really need to talk to you. Just for a few minutes.

Me: OK.

Man: I was in the Ballroom at the Blogger roundtable. You know what you said about kids with diabetes always saying “I’m sorry….” And then growing into adults who always say, “I’m sorry?” because they feel so guilty regarding their blood sugars?

Me Yeah….

Man: Well… It just really made me realize…. how many times my son has said "I'm sorry" to me. I was so upset about his blood sugar that… that…I wasn’t mad at him…. I was just so scared… But I know it sounded like, like I was mad at him – And I wasn’t … and now I feel so bad…

And at that point we both started crying, and we hugged one another and I told him it was OK and that he was a great dad and that being a parent of a child with diabetes is a tough job!

And then we both took a few minutes and got our game faces on and walked into the cocktail hour together – And we both had a better understanding of what it was like to walk in one another’s shoes - And I'm so grateful for that.

FYI: Thursday Blog is all about Sunday’s Dinner, the bloggers meeting the new JDRF President & CEO Jeffrey Brewer & Talking with “The Hillers” about the good, the bad, and the diabetesalicious of it all.

Disclosure: The JDRF paid for my travel, some of my meals and expenses. I wasn't asked to blog about my experience, nor did they tell me what I could or couldn't say. Like it or not, what I wrote and will continue to write are my thoughts, from my own diabetesalicious brain.

The DOC Goes To Washington, D. C. & Participates In JDRF's Government Day

I'm going to Washington, D.C. tomorrow to participate in JDRF's Government Day, an event that actually lasts four days and is a mixture of research; training, networking, Advocacy & meeting other families affected by type 1. It's also a great opportunity to let politicians know the real 4-1-1 on living a diabetes life.

And on Sunday, March 13, at 2:15pm EDT, I have the opportunity to be part of a diabetes Blogger Round Table Session with the likes of the awesome: Cherise Shockley; Kerri Morrone Sparling, Scott Strange, Scott Johnson, Kelly Close, Mike Hoskins, Allison Blass & Kim Vlasnik. And I can't wait! You can follow the discussion live on the JDRF's USTREAM channel, or on Facebook, or twitter by looking for the hashtag #JDRFGovDay, and tweets from your DOC reps: @txtngmypancreas @scottkjohnson @diabetesalic @sixuntilme @KellyRawlings

@AMBlass @Strangely_T1 @DiabetesSocMed & MHoskins2179.

Also, if you have anything you'd like the folks on Capital Hill to know, leave me a comment and you can bet your sweet blood sugar I'll tell the folks that we put in office what's on your mind!