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Beyond Type 1: LOVE IS ON.

Despite being up to my eyeballs in parenting stuff [insert baby who doesn’t sleep at all at night plus a big sister who had her first ear infection over the weekend here], I have been online.  And I’ve totally seen the Beyond Type 1 black-and-white photo’d community posts scrolling by, asking for donations and awareness for the Revlon LOVE IS ON Million Dollar Challenge.

I’ll admit that I was a little confused at first.  If Beyond Type 1 was aiming to win a million dollars from this campaign, why were they fundraising?  Of course the goal is to earn $1 MM for Beyond Type 1 courtesy of Revlon, but why are people fund raising if the goal is to win the big prize?  Is it to show how much the community can raise first?  Also, what does Beyond Type 1 plan to spend the prize money on?  I’ve been very impressed by the presence that Beyond Type 1 has created in the diabetes community, but I’ll admit that I’m not exactly sure what the organization does, or plans to do, outside of awareness.  (And I’ll also admit that I haven’t been focused on diabetes stuff in the last seven weeks, making me unaware of The Obvious lately.)  I needed to learn more.

So I emailed with Mary Lucas, Community Partners and Programs Manager for Beyond Type 1, and she provided me with some clarity for my confusion.   (All italicized answers below are from Mary, who is patient beyond patient when it comes to replying to multiple scattered emails from this exhausted new mom.)

From Mary:  

The Revlon LOVE IS ON Million Dollar Challenge is a six week challenge that 150 charities were invited to participate in. At the end of those 6 weeks, the nonprofit that has raised the most money total is awarded an extra $1 Million from Revlon. There are smaller consolation prizes for second and third. Every charity still gets to keep their money raised, it is just an extra added bonus. On top of that, the nonprofit that wins would be accepting a comedically-sized large check in a very public setting with media, etc. and would subsequently drum up a ton of press and hype around that charity and the cause associated with it. It would be really great to have a diabetes charity up there accepting the $1 Million from Revlon, as it would really help get T1D into the mainstream press and media.

As a non-profit, all our operations are covered by leadership and founding friends, so 100% of all money donated to us goes back into our portfolio of programs and investments.   This means we are fully operational funded, so $1 in to us is $1 back out into the diabetes community, not 75 or 80 or 90 cents, but the entire dollar, which is pretty rare for a non-profit. So far, we have invested in both our own native programs (that we currently offer for free for everyone in the type 1 community) such as our Snail Mail Club, the App, Education Initiatives and Resources, Camp Sessions, and the DKA Awareness Initiative we will be rolling out nationwide in just a few weeks.

We have also given grants to organizations working on cure efforts such as ViaCyte and the DRI, technology efforts such as Nightscout and Tidepool, and community /education /advocacy efforts like The Human Trial Film, Riding on Insulin, Marjorie’s Fund, and T1 International. The grant we gave to Marjorie’s Fund last year actually helped open a new diabetes education center in Uganda this summer! (To learn more about all of the grantees, etc. you can visit this page on the website.) We like to fundraise for a variety of things across the areas of educate, advocate and cure — we want to help people living with T1D today while still researching and working towards a cure for tomorrow.

If we won the Revlon Challenge, the extra money would be used not only to help fund our native programs and keep those going, but would also enabled us to open up applications for grants once again.

The Revlon Challenge also has some cool opportunities and bonus challenges they do throughout (such as matching donations, etc.) and we also have done some fun things like offering a Percy the Plushy Snail (our Snail Mail Club Mascot who is not for sale yet but is pretty much the cutest thing ever – he has an insulin pump!) for everyone who donates $50 to Percy’s fundraising page. And of course right now are doing the Nick Jonas meet and greet giveaway – so people have some cool opportunities to win extra stuff!

Thanks for all of the information, Mary!  Now I have a better idea of where our donation is going when we chip in for the Million Dollar Challenge.  Here’s hoping Beyond Type 1 is able to win the challenge and bring diabetes into mainstream discussion.

THE CONTEST ENDS OCTOBER 26th, SO IF YOU’RE GOING TO GET INVOLVED, NOW IS THE TIME!  🙂

“Do You Like It?”

“Excuse me … your, um, arm?  What’s that on your arm?”

Ninety-five percent of the time, I don’t care if people ask about my insulin pump or CGM.  More power to them for being bold enough to embrace the awkwardness and actually ask, instead of assuming.  (And even in the 5% moments of “argh – stop looking, don’t ask,” it usually ends up being a moment of discussion and disclosure I’m grateful for.  I should be more open to discussing diabetes in a public setting.  Hang on a second … let me start a blog real quick.)

“On my arm?  That’s my insulin pump.  I have diabetes.”

I was in line at Starbucks, grabbing an iced coffee (under the gestational lock and key of decaf for just a few more weeks), escaping the blazing summer temperatures for a few minutes before heading back to work.  I was wearing a skirt and a tank top, with my infusion set connected to the back of my right arm.  My body – thanks to third trimester expansion, has run out of subtle places to stash my insulin pump, so it was casually clipped to the strap of my tank top.

Kind of noticeable, but in a “who cares” sort of way.  It’s hot outside.  And I’m wicked pregnant.  And I have no waist anymore.  You can see my insulin pump?  Good for you.  You can probably see my belly button, too.

“No kidding.  Diabetes?  Is it because of the pregnancy?”

“No, I’ve had diabetes way longer than this pregnancy.  I was diagnosed when I was seven.”

The guy paused for a second, his eyes lingering on the infusion set on my arm.  “So you do that thing instead of shots?”

“Yep.”

“Do you like it?”

That question always throws me a little.  Do I like it?  The pump?  I do like the pump.  I like not taking injections.  I like not whipping out syringes at the dinner table and exposing my skin.  I like taking wee ickle bits of insulin to correct minor highs.  I like running temp basals to beat back hypos.  I like people wondering what it might be instead of assuming it’s a medical device.

“I do like it.  It works for me.”  I paused, already envious of the coffee in his hand.  “I like coffee more, though.”

He laughed and finished paying for his coffee.  “Can’t blame you for that.  Good luck with the baby, and try to stay cool in this weather,” he said.

I don’t like diabetes.  That’s for damn sure.  That shit is exhausting and I’m burnt out on the demands it places on my life.  But the pump?  Yes, I do like it.  It’s  a streamlined delivery mechanism for a hormone I wish my body would just cave and start making again.  It handles diabetes so I can go back to trying to put my socks on without tipping over.

Guest Post: Diabetes Isn’t Easy, But Acting on Policy Can Be.

This morning, Bennet Dunlap is taking over SUM because he has something to say.  Changing health policy has become a project of Bennet’s for personal reasons, and with the help of the diabetes community, he and others are aiming to make a difference.  Today he’s writing about the Diabetes Patient Advocacy Coalition and how it’s aiming to be the “easy button” for the DOC and policy.  

And because he used the phrase “rat bastard” more than twice in this guest post, I’m particular partial to it.

 *   *   *

Diabetes is not easy. It doesn’t fit well into life. Diabetes is chronic – a word that here means the rat bastard never goes away. Never going away doesn’t fit into a medical system designed for acute care, meaning a cute little health issue that gets cured.

Readers of Six Until Me already know diabetes is not cute or cured, doesn’t fit into life, and is the aforementioned rat bastard. So you are probably not shocked to know that diabetes doesn’t always fit into health policy either.

Health policy runs into diabetes at many levels. There are more than three dozen federal agencies that touch diabetes. State laws impact schools, diabetes education, and even infection protocols in hospitals and extended care facilities. All the people, in all those positions, have all the same mix of understanding and confusion about diabetes as the general public they represent. A few get it; most don’t and some are woefully misinformed.

I suggest that living well with diabetes is a model for good diabetes policy advocacy. We live better with the help of others. We have healthcare teams to help with the clinical aspects of care and help translate academic advances into those programs. We have communities to help with the equally important psychosocial aspects of staying engaged with the rat bastard, diabetes.

On the policy side, we have professional and academic groups that speak to the science of policy issues. There is a whole bowl of AlphaBits of these including ADA, JDRF, AACE, AADE, DTS, CDC, NMQF and more. I think that policy advocacy is most successful when health professionals and patients work together. A FasterCures white paper on advocacy, Back To Basics, as a catalyst for health policy change writes:

“The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change.”

Our job is urgency.

Change happens when officials hear the real needs of people with diabetes, particularly when we are their constituent. But if diabetes does not fit into life, learning the intricacy of politics certainly is one more unpleasant thing too many.

What we need, is an easy way to create diabetes policy urgency.

I got that, in another spoon full of AlphaBits; the Diabetes Patient Advocacy Coalition. But that doesn’t fit on a spoon so DPAC for short. It makes it easy to keep track of issues, opportunities, find your elected officials, and know those officials’ positions. DPAC does all that so you don’t have too.

Most importantly DPAC makes it easy to act.

Here is an example: We all know that CGM is a game changer in diabetes care. Medicare does not cover it. Many succeed in fitting diabetes into their lives with the help of CGM, and they lose it as a care tool when they age into Medicare. That is not right. One hundred and eighty-five members of the US House and thirty-seven senators agree. They have cosponsored a bill to cover CGM. We should thank the supporters and urge others to join.

DPAC makes that easy.

Click the logo, fill out your address, and the DPAC will look up your elected officials. It checks to see if they have already cosponsored the bill and drafts a note of thanks to supporters or an ask of those who have not yet joined as cosponsors, to do so. You can add your story to the message or just send the message along.

Easy.

I mentioned three dozen federal agencies earlier. There is a bill to have them work together. A generation ago a similar effort brought us DCCT and tight control. A new generation of drugs, devices, a software promises another opportunity to change diabetes care. DPAC has an easy button there, too.

Diabetes is chronic; that means we need to keep at it to be successful. We need to keep at policy too, or elected officials will think the rat bastard has gone away.

Diabetes isn’t easy but PDAC makes it so acting on policy can be.

  *   *   *

Bennet is a passionate advocate for better diabetes care.  He is the father of four, two of who live with type 1 diabetes. Like millions of Americans, Bennet tries to be successful with type 2 diabetes himself.  He has created a variety of social media projects including the advocacy campaign StripSafely, DrinkingWithDiabetes a resource for families sending type 1 students to college, The Diabetes Patient Advocacy Coalition and his blog Your Diabetes May Vary. Bennet is an integral member of the Spare a Rose / Save a Child community supporting the IDF’s Life for a Child program. Bennet has given patient perspectives in public views before the FDA’s Endocrine and Metabolic Drug Committee on diabetes medication. Recently he has been a consumer reviewer for both PCORI and CDMRP grants.
 
With a degree in finance from Lehigh University, Bennet pursued a career in commercial banking. Following the diagnosis of his children with type 1 his passion for advocacy grew and he earned a master’s in health communications from Boston University to serve better the diabetes community.

Spare a Rose 2016: Final Totals.

In 2016 the diabetes community, both online and off, made a huge difference for children with type 1 diabetes in developing countries.  This year’s Spare a Rose campaign raised $25,331 from 537 donations, saving 422 children.

Read that again, please?

Four hundred and twenty-two children.

Through the endless generosity of people in this community, donating their time to share the message, their ability to rally support, and their willingness to give both emotionally and financially, we helped save the lives of 422 children.

Since the beginning of the Spare a Rose campaign back in 2013, we’ve directly influenced the lives of 1,422 children in 36 countries.  This is a big deal.  Each number in that 1,422 represents a single kid, no longer struggling for access.  Imagine if that were your kid.  Imagine if that were you.

Thank you to the companies who participated and matched donations, who shared it with their employees, and who threw their social media muscle behind the effort.  Thank you to the individual members of the DOC who, far and wide, shared the donation link and their reasons for believing.  Thank you to Life for a Child for providing a way for small change to make a big difference.

And thank YOU.  This campaign is effective because everyone owns it, and everyone benefits from it.  The lives of these children are improved because of you.  You shared the donation link.  You told your coworkers.  You reached into your own pocket and spared five dollars.  Every voice matters.

The difference we made as a community, for our community, is because of you.

You Don’t Look Like You Should Have Diabetes.

“And this, too, please,” I said, sliding the opened and half-consumed bag of gummy candies across the counter, my hands shaking.

This low was bad.  The symptoms were very visible, with unsteady hands and knees that were buckling out and sweat beading up on my forehead despite the 40 degree weather outside.  I knew I was the color of a cotton ball, with the mental capacity of one as well.

My Dexcom had gone off about ten minutes earlier and I picked around in my purse for the jar of glucose tabs that I soon realized were tucked neatly into the cup holder of my car.  Out in the parking lot.  (Useful.)

Necessity forced my hand to grab the way overpriced bag of candies off the shelf and consume a handful.  “Most expensive low ever,” I muttered, aware that coming up from this 45 mg/dL was going to cost me a pretty penny.  I needed to get out of the store and reassemble my wits, but lows don’t excuse shoplifting, so I made my way to the cashier to check out.

“Are you okay?” the cashier asked, probably because I looked half-removed from the planet.

“Yes, thanks.”

“These candies are open.  Do you want a different bag?  These have been half-eaten,” she said.

“No, it’s okay.  I ate them.”  I smiled in a way that I hoped looked reassuring but probably looked weirdly menacing.  “Low blood sugar.”

“Diabetes?”

“Yeah.”

She smirked.  “And here you are, buying candy.  Isn’t this part of the problem?  You don’t look like you should have diabetes.  Maybe you should stop eating candy.”

I would have rather been eating a banana, to be honest.  Treating with fruit is my preferred way to upend a low.  Or I would have rather had some measured glucose tabs so I knew how much I was consuming and could avoid the post-low rebound.  Fuck, you know what?  I’d rather not have been low at all, because being low in a public place is embarrassing and makes me feel vulnerable.

Let’s just round it out and say that I’d much prefer not to have diabetes in the first place.

“The candy is to bring my blood sugar up.  It’s to keep me from passing out here at your counter.”  It was hard to make the right words come out, but anger jumped ahead of hypoglycemia.  My voice was sharp, like the plummet on my Dexcom graph. “What does someone who should have diabetes look like, anyway?

She didn’t look at me.   And I was glad she didn’t.  I popped a piece of the candy into my mouth, my attempt at a PWD version of a mic drop.  I don’t look like I should have diabetes?  Maybe that’s the point.  Maybe she needs an education on what diabetes does look like, instead of viewing my disease as a punchline, one that society judges unabashedly.

All of a sudden, I can’t wait for November.

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