by Christel -

Fab Five Fridays: The Tax Man Edition

452697_93454420Some people give to non-profits because it’s the right thing for them to do. Others give to non-profits because they can claim the donations on their taxes. I don’t care why you donate, but today, I’m giving you my choices for non-profits that will not only help your bottom line, but will also help those who help us. (And if you’re going along with my Beatles theme I’ve got going on here… “Help!”)

There are a lot of great diabetes related non-profits like JDRF and the American Diabetes Association – and they do a fantastic job raising funds for research and projects through various events and walks and the like. I’m focusing on the ones who rely on us to seek them out. These organizations don’t have a ton of staff or volunteers to rally around events and fundraise, but still need help. In no particular order, these are near and dear to my heart:

1. The Diabetes Hands Foundation isn’t looking for a cure. It’s looking to empower the community and connect those with diabetes (and those who love them) with others. The incredible staff and volunteers work tirelessly to create value for all who need services and help to raise funds for other organizations. Seriously, how cool is that? You can make a one-time donation or set up a recurring investment.

2. While not a recognized 501 not-for-profit in the United States (it’s a non-profit based in Australia so maybe if you’re an Aussie, you can get a tax break…), Insulin for Life is an organization that brings lifesaving supplies to those who don’t have access to it. I can’t even imagine how panicked I would feel if I couldn’t have access to the one thing that keeps me alive, can you? They are looking for not only monetary donations, but unused, unexpired diabetes supplies. Every little bit helps to defray the cost of shipping, so if you are inclined, give them a few dollars to help others have what they need to live.

3. Diabetes Scholars Foundation offer scholarships for two important groups: Type 1 high school seniors who plan on continuing their education after graduation and families of Type 1s who wish to attend the phenomenal Children With Diabetes conference. Every little bit can help a teen or a family who needs a little extra to get the education (whether academic or emotional) they crave and need. (They’ve awarded scholarships to over 400 families to attend conferences. Seriously amazing.) Speaking of Children with Diabetes, they are now a not-for-profit, but did not have a donation button on their website. As soon as that becomes available, I’ll post it here. Why? This.

4. Joslin Diabetes Center also allows you to donate and is a tax-exempt organization. I was given the best possible care after my diagnosis and for several years after with their top-notch medical staff and researchers helping me along the way. Without them, I’d be in a sorry mess of things. If you have a medical center that focuses on diabetes research or patient programs, I’d love to hear them. List them and the links in your comments and I’ll add them at the end.)

5. And last, but certainly not least, diaTribe is now a non-profit organization, “committed to improving the lives of people affected by diabetes and prediabetes and advocating for action.” The newsletter and research information that they profit is the best I’ve ever seen for those of us who want to learn about the latest and they have been incredibly supportive in so many endeavors.

So, if you have a few pennies to spare, please consider donating to these worthy organizations who support the things we need to keep us “alive and kicking”. (Yes, that was a Simple Minds song reference and not the Beatles.)

“All you need is love…” and a little cash for charity.

by Christel -

Keep Calm & Do…

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It’s big. It’s blue. It needs you.

I’m not talking about an overweight Smurf. (But if you want to keep the visual of Papa Smurf as you read this post, you go right ahead.)

The Big Blue Test is on like Donkey Kong for 2013 and if you’re pancreatically challenged, you can help. (Don’t worry – if you’ve got a working pancreas, have I got a deal for you. Hold on the line, please.)

You know how I prefer to avoid using that E word, right? Exercise. (Shiver. Grimace.) But when it’s for a good cause and can help other people, I’m going to do it – so join me.

My friend, Manny, explains it well. (And I get to see my amazing ninja, George Simmons, play basketball with his equally amazing son, so I love this video.)

Here’s the official scoop:

Since 2010, over 40,000 people helped themselves while helping more than 10,000 others. Most participants in the Big Blue Test experience an average blood sugar drop of 20% and by every Big Blue Test result a donation is made by the program sponsor to help others around the world with diabetes in need.

The Big Blue Test is a program of the Diabetes Hands Foundation that encourages people with diabetes to test their blood sugar, exercise for 14-20 minutes, test again and share their experience on BigBlueTest.org. For every test, people with diabetes in need receive life-saving supplies through Big Blue Test grants that are awarded to humanitarian diabetes charities in the US and around the world, made possible thanks to the program sponsor.

In 2013, the Big Blue Test grants will benefit two US-based initiatives (each will receive US$2,500) and an additional US$5,000 will support projects in Haiti and the Dominican Republic.

This year, we’re seeking to reach 20,000 Big Blue Test entries, which will translate into a donation that will help save lives.

Help yourself and help others. Get active, join the movement: do the Big Blue Test every day!

Now, for those with diabetes, you’re already testing. Test, go dance to your favorite songs in your living room (toddler not included, but I use one for comedic relief), and then test again. Then post your results.

Lather, rinse, repeat. Don’t like to dance? Walk. Run. Swim. Bike. Aggressively push a grocery cart around the store. Just test, get your groove on, test again, and post.

But wait! There’s more!

mySugr, an app that helps make diabetes management fun, is also challenging us with the BBT challenge. Log your results and they’ll give you some free “Pro Days”. It’s not just a win-win. It’s a win-win-win – a win for you, a win for the Big Blue Test, and a win for those who need our help.

If you’re not a person with diabetes, then you can still participate. (See? Didn’t forget you.) You can donate directly to the Diabetes Hands Foundation here.  You can spread the word by sharing this post with your friends. (Because, let’s be honest. I bet you know at least one other person besides me who has diabetes. There’s a lot of us – both Type 1 and Type 1 can participate…)

There’s so much good to be had from 12 to 14 minutes of moving around…so let’s all keep calm and do this.

Together.

 

by Christel -

Obituary

965851_98019530To be published everywhere possible upon my, what I know will be, untimely demise. 

Christel Marchand Aprigliano, loving but surely exasperating wife of John and adoring-to-the-point-of-nausea mother of The Kid, passed away, mid-laugh, at the age of 109 after dancing the night away in Ibiza.

Born in the best place on earth and raised by caring parents who often wondered what to make of her, Christel excelled in talents that would make her neither rich nor famous: fudging blood sugar logs, injecting insulin on the sly in the middle of restaurants, knowing exactly how many Skittles it took to bring her back from a hypoglycemic breakdown but always forgetting to count them out while she was low, and coming up with snarky answers to the question: “Can you eat that?”.

Christel hated to be wrong, loved to be needed, and did what she could to make the world understand that diabetes should not be feared, often telling others to make diabetes their “bitch”. She also cursed like a sailor, much to the chagrin (and sometimes glee) of those around her.

Her life led her many places, geographically, mentally, and professionally. Carrying more than her share of guilt-filled baggage, she spent years wandering alone with her illness before she found compatriots who lit her way. The Diabetes Online Community brought her wisdom, joy, and occasional tears, but most of all, it brought her friends who understood her.

At the end of her life, she reflected on her days with Type 1 diabetes, saying simply this: “It sucked.”

The cure, while not ridding her of the complications she already had, gave her many enjoyable years of eating crème brûlée and running around without a purse filled with Glucolift. It did nothing, sadly, to stop her potty mouth.

Her blog, ThePerfectD, and other very cool projects with other very cool people, turned from the topic of diabetes to other worldly pursuits, including traveling to exotic places on a moment’s notice with just a bikini and a toothbrush or annoying her daughter because.she.could.

She would have told you to send memorial donations to the Diabetes Hands Foundation or JDRF, but after those non-profits disbanded because diabetes ceased to exist, she requests you eat a large spoonful  (or two) of Ben & Jerry’s Red Velvet Cake ice cream in her honor and dance like a happy fool until morning.

 

 

 

by Christel -

5 Thoughts About the DTS 9.9 Meeting

If you want the (mostly) objective summation of what happened at the Diabetes Technology Society’s meeting on September 9th in Bethesda, MD regarding blood glucose monitoring accuracy, you can go to the Strip Safely blog post that I wrote.

If you want to read my top five completely subjective thoughts on the DTS meeting, read on…

1. I want to move to Norway.Flag_of_Norway

They’ve already got the process/system in place over there that doesn’t allow inaccurate meters and strips onto the market. It’s basically what DTS has proposed to do here in the U.S. and it works brilliantly over there because the government believes in the program (called SKUP) and it’s mandatory. I don’t believe that the same thing will happen in the U.S. without it being mandated by Congress, which will take a while.

Dr. Grete Monsen of Norway gave an amazing presentation and gave a lot of advocates in the room a glimmer of hope.

(I’m kidding about moving to Norway. I love their sweaters, but I’m not big on the cold weather.)

2. They’re going to have to build a bigger boat.

Yes, a Jaws reference. Why? Because diabetes advocates have teeth.

A post-market testing program is going to need a lot of people involved and a lot of funding to go with it. The room was filled with representatives from industry, clinicians, government, and patient advocates. It wasn’t a ballroom, but there was a lot of dancing around issues that must be addressed. Most of it is regulatory and governmental and financial, but Dr. David Klonoff, the president of the Diabetes Technology Society said that they will be building a roster for a steering committee to start… and it must include patient advocates. When he first mentioned the steering committee, patient advocates were not included. Someone quickly reminded him of us and we were added during his final comments.

3. Dr. Gary Puckrein is my new hero.

Sitting at the end of the esteemed panel of clinical and patient representatives who all gave their views on the need for glucose monitoring accuracy, he waited patiently as others gave their views. I’m sure that he had his talking points and was ready to add his approval to the collective voice when Dr. Elizabeth Koller began reading her prepared statement….about how for her “patient population” (i.e. Medicare and CMS), accuracy really doesn’t matter and that the tools currently available are just fine.

(Look. I’m paraphrasing, because I began to see red and stream poured from my ears. With such dispassion, she essentially told all of us that we were wasting our time sitting here, because as long as the FDA approves a meter, it’s fair game for Medicare and they’ll choose what millions of people will use. Sort of a “nanny-nanny-boo-boo – suck it up and we don’t care because we’ll do what we want and what’s cheapest” attitude.)

Dr. Puckrein was called upon to speak and instead of launching into his prepared statement, he turned to her and (again, I’m paraphrasing) told her that what she was saying was scary and that if this is how Medicare and CMS was going to play…

“We are going to come after you like dogs.”

My hero. I want that man in our corner and thankfully, he is.

4. The FDA needs a good public relations firm.

I have to tip my hat to the FDA representatives at the meeting. They’re like Timex watches – they take a licking and keep on ticking. Diabetes advocates asked over and over about enforcement and what it would take to remove an inaccurate meter and strips from the market. They never wavered in their vagueness. We expect that. What we didn’t expect was the admission that they don’t do a very good job of explaining what they can and cannot talk about in terms of enforcement. I’d love to see a PR firm get their hands dirty and revamp the forward-facing portion of the “What we do” part of the FDA’s device division website, giving all of us a better idea of what steps they can and cannot take… so that we don’t have to repeated ask and get repeatedly shut down. It was frustrating to all of us – advocates and the FDA alike.

Boots5. We have a long road ahead. Get your boots on.

So, you may be asking… what’s next? Didn’t you get what you wanted? Aren’t we going to get better accuracy from our strips?

Answer…. Not without enforcement and making it mandatory. And funding.

It’s one thing to have a proposal. It’s another thing to make it happen.

Funding, whether through Congress or private philanthropic organizations, has to happen. This is not a “let’s get this on Kickstarter” project… this is a Dr. Evil putting his pinky up to his mouth amount of money… And it needs to continue to be funded.

Support from the government is essential and not just the “we think this is a great idea” lip service. Once the program is up and running, the data given to them has to be acted upon, especially if it is determined that some meters and strips aren’t meeting standards (Hint: some already aren’t…). Without enforcement and “if you show us the data, we’ll act on it”, this becomes another pie in the sky project. The only benefit is for those who can afford to pick and choose their meters and supplies without suffering financial setbacks because their insurance company won’t pay for the accurate ones. That’s unacceptable.

We have a long way to go…. and we will all be right there, because we want industry and government to see the faces of those that accuracy and diabetes impacts.

Every meeting. Every discussion. Every time. 

Disclosure: The Diabetes Hands Foundation compensated my travel and lodging to attend the Diabetes Technology Meeting on September 9, 2013. My thoughts and feedback are my own and are not representative of the DHF or the Diabetes Advocates program. 

by Christel -

What They Said… Rocking It Strip Safely Style

SS_LOGO_STACK_TIGHTProud and honored to have attended (and even got to stand up and say how I felt) during this amazing meeting. The Diabetes Technology Society was gracious, welcoming diabetes advocates with open arms.
 
Here’s the official statement from Strip Safely and Diabetes Hands Foundation. Stay tuned for my own views and the highlight reel. (I’m still riding on a dizzying array of emotions – and caffeine, because it was a late flight home.)
 
Click on the link and hear what they said…
 

Diabetes Hands Foundation Commends the Diabetes Technology Society (DTS), Food and Drug Administration (FDA) for First Steps to Protect Diabetes Patients (via PR Newswire)

Sept. 9 Forum Outlines Proposed Mandatory Surveillance Program of Blood Glucose Monitors; Patients Call for Greater FDA Enforcement BETHESDA, Md., Sept. 10, 2013 /PRNewswire-USNewswire/ — The Diabetes Hands Foundation commends the Diabetes Technology…