Tag Archives: Diabetes Hands Foundation

So Worthy: Diabetes Hands Foundation.

With the end of the year approaching, I wanted to write a few blog posts with the idea of pointing you toward some important (to me, anyway) diabetes organizations.

I recognize that JDRF and the American Diabetes Association are important non-profits that deserve your support as well. But I want to dedicate these posts to other organizations that are doing important work to further the cause and improve the lives of everyone living with diabetes.

If you have a few dollars left at the end of the year, consider making a donation to these worthy organizations.

One other thing: I was not asked to write nor am I getting anything for writing about these groups.
 
 

Diabetes Hands Foundation

Where do I begin? Diabetes Hands Foundation delivers so much value to the diabetes community, it’s hard to overestimate the importance of their impact to the diabetes landscape.

Founded in 2008 by Manny Hernandez and his wife Andreina Davila, DHF has grown to include many initiatives that benefit, educate, and provide relief to People With Diabetes everywhere. Here’s just a sample of their impact:

TuDiabetes and Es TuDiabetes: In English, TuDiabetes, and in Spanish, Es TuDiabetes, provide a place for people living with and affected by diabetes to go for support, encouragement, information, and connection. The two social networks boast over 50,000 members, and to me, that’s a heck of a village. But that’s not all.

Diabetes Advocates: Diabetes Advocates is a place where people advocating on behalf of those living with and affected by diabetes can connect, educate and empower each other. We learn how to be better advocates, we coordinate efforts to more effectively impact issues affecting us, and so much more. On its own, Diabetes Advocates is a remarkably impactful organization.
Full Disclosure: I am a member of Diabetes Advocates (note the DA button in the left column of this page).

The Big Blue Test: A popular happening during Diabetes Awareness Month every November, the Big Blue Test is a way to both get more active and help raise money for people in need, because every time you exercise and log it at bigbluetest.org, a donation is made to help people living with diabetes. So it’s a way to see the benefits of more exercise, and the benefits ($) of more exercise. Win-Win!

Those three are only the beginning. Just in this year, Diabetes Hands Foundation has been instrumental in delivering MasterLab at the Friends For Life conference in Orlando in July, and they were a big part of the historic #DOCasksFDA meeting that occurred back in November. They also provide scholarships for people to attend conferences throughout the year, which is why I first donated. Regular education and discussion is ongoing nearly every day.

If you have a few dollars you’d like to devote to a non-profit that will put those dollars to great use, you’d have a difficult time finding a better place to direct those dollars than Diabetes Hands Foundation.

If you’d like to donate, all you have to do is go online to
https://diabeteshandsfoundation.org/donate/
 
 
Monday, we’ll look at another special diabetes group helping to make our lives better every day.
 
 
 

Like These Links.

A few quick hits for you today, since my life has become crazy in the last few days:

– First, the reason why things are so crazy: I developed a major tooth problem over the weekend, which necessitated my first trip to a dentist in about ten years. More on that later. But a root canal is in my very near future, and because of that, my pump decision has been put on hold until 2015. I think my new gravatar is going to be me crossing my fingers, hoping my Medtronic Revel™ pump holds out. If it doesn’t, I’m back on MDI until I can save some money.
 
 
– Speaking of insulin pumps: I have two things to tell you about. First, as many of you know, Asante, makers of the Snap pump, will let you try out their pump for up to 30 days. They’ll even throw in a voucher to cover the Humalog cartridges that go with it. And if you decide to try the Snap pump this month, mention Diabetes Hands Foundation, and Asante will make a donation to DHF. Win-Win! To find out more, go to http://snappump.com/landing/dhf

Something else made its way to my inbox… During the month of December, Tandem, makers of the t:slim pump, are offering up to $400.00(US) toward the out-of-pocket cost of the t:slim as part of a pump exchange program. I’m a little short on details, but if you contact your local t:slim rep or call 877-801-6901, I’m sure they can fill you in.
 
 
– Your response to the open docket on Food and Drug Administration Activities for Patient Participation in Medical Product Discussions (Docket number FDA-2014-N-1698) has been tremendous. People have blogged and reblogged and shared via Facebook and Twitter and other avenues, and that has caused a noticeable spike in comments added to the docket. Last I checked there were 106 comments submitted so far. Thanks Strip Safely, Diabetes Mine Diabetes Hands Foundation and Diabetes Advocates, Christel Aprigliano, Bennet Dunlap, The Type 2 Experience, and everyone who has shared this far and wide.

If you haven’t left your comment yet, you still have until December 4th. That’s two days from this publication.

It takes a village, and this village rocks.
 
 
So… what’s new in your world?
 
 
 

Perspective.

As I sit here watching the sunrise begin another glorious day on the beach, I’m filled with… well, a sense of relaxation, really, and an inherent question about why I’m out of bed this early on my vacation.

But stay with me– there’s a point, and it has to do with…

Perspective.

I’m quite fortunate to have this one week during the year, away from work and other distractions. I know many others who never take more than two or three days off at a time during their entire working lives, unless they wind up in the hospital. In other countries, heck, in our country, sometimes people have to work seven days a week for years at a time just to get by.

I also have this insulin pump that I use (which is giving me fits right now, but stay with me), that helps me manage my diabetes easier. Some people don’t have the luxury of having a choice between pumping or multiple daily injections. It’s just the injections, IF they’re lucky enough to get coverage that will pay for part of it, and IF they can afford the astronomical costs of the things that aren’t covered.

I have access to insulin, the wonder drug which will keep me from dying from the effects of Type 1 diabetes. Many in other countries do not have such access, and lack of access to this simple potion, that’s been in existence for nearly 100 years, threatens their very existence.

I have access to this fabulous Diabetes Online Community, where a wealth of support and encouragement awaits with the simple click of a button. Yet many are left wanting for understanding and education because they are unaware or unable to discover this life-affirming element to their diabetes circle of influence.

I’ll be honest… I’ve made the most of the opportunities I’ve been blessed with. But a lot of those blessings came as a result of where I was born, and the environment into which I was born.

I’m not sure if I have a big focus for Diabetes Awareness Month (which begins November 1, by the way). But I know I would like to do something to help people who, through no fault of their own, have little to no options when it comes to diabetes care. That includes people in my own country, the USA.

It’s easy to sit and complain about things that are wrong in the world. But I never want to forget about the children, the parents, the brothers, and the sisters living with diabetes who need our help. You can find them all over. And you can help them.

If you keep your perspective.
 
 
The Big Blue Test begins October 15. For every test taken, Diabetes Hands Foundation will make a $1.00 donation to a worthy diabetes effort. For more information, go to bigbluetest.org.
 
 
 

#MasterLab: Advocacy and Movement.

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This MasterLab thing… it was great, it really fired me up to do more with my advocacy, and it even boosted my morale.

Now what? And by extension, you may be thinking, “What do you want me to do?”.

For me, advocacy is a very personal thing. I think it should be for you too.

My only advice: Don’t let the word handcuff you.

I try to think of advocacy with a little a, rather than a big A. I don’t give the word too much influence over me. Earlier in my life, I was intimidated by the word. That intimidation caused me to do nothing at all, which doesn’t help anyone.

But not any longer. Not because I suddenly got braver. No… now I try to concentrate on the things I’m capable of focusing on. If my efforts need to start small, then grow later, okay. I simply try to do what I can, when the need arises. If that eventually turns into full-fledged Advocacy with a capital A, then great. If not, I’ll find something else to get involved in. Not everything is a roaring success.

But… some things are. I not only want to be a part of those successes. I want to help make them happen sooner.

Here’s how you can take a tangible step toward joining a movement, all from the comfort of your own electronic device:

Go to the Diabetes Action Hub now. Take the Diabetes Advocacy Survey (you’ll complete it in less than 5 minutes). Add your information to the database. Help build a strong group of supporters that will be part of a movement, allowing us all to help make our cause bigger and stronger. Then check out the rest of the Diabetes Action Hub to find out how you can help right now. And don’t forget to visit often for updates and calls to action on issues that mean the most to us.

Do you know what has happened to me over the past two and a half years? I’ve gotten involved from time to time in efforts designed to help people. I haven’t always had the time to throw myself fully into whatever need arose, but often I was able to do at least something. What that means is that unlike two and a half years ago, I am actually doing something.

There is a difference between advocacy and a movement. Advocacy is being in someone’s corner… I’ve got your back. I’ll stand up for you, whether or not you can stand up for yourself.

A movement is when many people take tangible steps that have a positive impact for others. Those tangible steps are often small steps. But in big enough numbers, they can move mountains. One big effort by one person is significant. Many small efforts toward the same goal create a movement that no one can ignore.

We need more advocates. No question about it. We need more agitators and litigators and innovators. If that’s you, please step forward. I’ll stand with you and support you.

But I think what we’re missing is a movement. A movement that comes from an army of people that numbers in the hundreds of millions worldwide, who are living with and affected by diabetes. An army of people who are willing to say “I can’t do everything, but I can do something, just let me know”. An army of people who are just trying to do what they can, when the need arises. Because life, and the quality of life, hangs in the balance.

Things have improved tremendously for People With Diabetes in the past few decades. But we’re still an underfunded, misunderstood, red-headed stepchild of a condition. Whether you think five people calling your congressperson is a movement, or whether you think 500,000 people marching on the capitol is the correct definition of a movement, the fact is we need both you and me to be able to reach those numbers. We need you and we need me and we need your family and we need the people at your local coffee house and we need the Congress and the Senate and the President of the United States and if need be, the Supreme Court to get on the steamroller that’s just starting up right now. I look forward to the day when we’re no longer talking about starting a movement, but rather talking about the movement we started.

Are you with me? Take the Diabetes Advocacy Survey now.
 
 
 

Room full of icons.

MasterLab

I was fortunate enough to attend the Diabetes Advocates MasterLab in Orlando last week. I was there thanks to a scholarship provided by Diabetes Hands Foundation. My thanks to everyone who made this event possible, and made it possible for me to attend.
 
 
This is about the experience. Showing up at an event like MasterLab, taking place in the middle of the Children With Diabetes Friends For Life conference, means a lot of potential D-celebrity sightings. At the same time, I’m there for a reason, and it isn’t to be a fanboy (I really hate that term, but it’s quite descriptive in this case).

Knowing I was going to see some amazing writers and diabetes advocates that I had admired from afar but hadn’t met yet definitely had me pumped up as I made my way to Orlando. I can’t say I felt intimidated. I’ve been in rooms with important people plenty of times. I just try to be as nice, as polite, and as kind as I can, and you’re either going to talk to me or you’re not. No big deal. My worry is always that I’m going to meet someone who thinks I’m annoying, or that I’m keeping them from something they feel is really important. If I did that to you last Wednesday, I’m sorry. That was not my intent.

The real truth is that for me, attending MasterLab was an emotional experience. On a number of levels. Including and especially on the personal level. So please allow me a moment to get all fanboy link-a-palooza on you. I may not cover everyone I encountered here, but that doesn’t mean I don’t value you… it only means my memory sucks.
 
 
Before I came down to Orlando, I knew that Manny Hernandez was a big deal. It wasn’t until I actually met him that I realized the magnitude of his personality. We’ve got a good person helping to lead the charge.

I did meet two people I hadn’t heard of before Wednesday. These two people sat at my table. This is the only photo I got of any of the special people I met during MasterLab.
DSC01624

Mike Ratrie is a media publisher by trade. He’s also been a Type 1 for forty years or so. He’s smart and quick-witted and fun to talk to. During one of the breaks, we went across the hall and gave blood for celiac screening and other testing that the TrialNet folks were doing. Sia Figiel is originally from Samoa. She’s living with diabetes, and she’s lost over 100 pounds in the past year. Lately, she’s been participating in a CNN-sponsored project called Fit Nation. She’s one of six people chosen by Dr. Sanjay Gupta to train for a triathlon in September. Each participant is dealing with a serious health condition. Sia’s story is amazing, full of bravery and resilience. She sounds like she’s doing great. Here’s a video of her and the other Fit Nation participants from back in February (Sia appears near the end– sorry, I couldn’t get it without the ad at the beginning).

Christel Marchand Aprigliano reminds me of my mother-in-law (some fanboy comment, eh?). Really, I mean that in a good way. My mother-in-law was a good and kind soul who was always glad to see you, and always made you feel like the most important person in the room. Everything good about Tish is everything I learn from and admire about Christel.

Another writer I enjoy reading is Sue from Diabetes Ramblings, who’s living with Type 2. I was really happy to meet her since she was the one who wrote me nominating the daughter of a friend for one of our Champion Athlete With Diabetes medals. I don’t think I saw her not smiling whenever I saw her. Something like this has that kind of effect on you.

Another Type 2 present was Kate Cornell, from Sweet Success. As we speak, Kate is collaborating with Laddie Lindahl at Test, Guess, and Go on a series of Type 1/Type 2 conversations that are already leaving me on the edge of my seat. I think this event really got Kate’s advocacy mojo going. It will be interesting to see where it takes her.

When I was getting set up in the meeting space that day, I was looking for a wi-fi password so I could do some live tweeting from the event. The people at the next table appeared to have everything up and running, so I decided to ask one of them if they had a password. I tapped on the shoulder of the person with their back to me, and Meri Schumacher turned around. Umm…. Hello Icon. I don’t generally read blogs written by parents of children with diabetes, but Our Diabetic Life is something I read often. Simply put: Sometimes the written word moves you, even if you don’t have kids.

Speaking of awesome D-parents, Tim Brand came up and introduced himself, and unfortunately for me, I didn’t spend enough time talking to him. I always like to hear how people got to where they are at a gathering like this, and I would have liked to hear Tim’s story. Next time I hope. In the meantime, I’ll keep following his tweets and reading his excellent blog posts as he continues to advocate for the two of his four children who are living with diabetes.

When I found out Alanna Swartz was there, I knew I had another person to add to my must-meet list. Alanna is making a career out of outreach and advocacy for people like her and me by serving as outreach manager for JDRF Nova Scotia. Her blog is like many others… when you read her story, you sit up and say “me too!”. I look forward to reading about her for a long time to come.

It was a very nice surprise when I met Briley Boisvert. When I was her age, I thought I was so smart and creative. But Briley is so much smarter and more creative than I could have dreamed about then. I’m kinda jealous, to be honest. That phrase “I wish I knew then what I know now”? That’s what I think of when I read her blog.

And Jess from Me and D said hello! I think she’s got one of the biggest smiles I’ve seen in a long time. If you want to read what it’s like to really live on the diabetes front lines, you should visit her on the web. She tells it honest and with feeling.

Like everyone else, I enjoy reading Heather Gabel’s blog entitled Unexpected Blues. To my chagrin, I was only able to say a brief hello. Maybe my biggest regret of the day was not getting five minutes to sit down and listen to the voice that puts all those great words on my screen.

I was negligent last August when I attended the DSMA meetup in Philadelphia. I knew Sara Nicastro was in the room, but I didn’t say hello. I’m glad I was able to right the wrong this time. I’m also glad that Sara is so patient with me, because it seems like every time I’m involved in a project with her, I always screw up something. Hopefully, I’ll get the June Best ‘Betes Blogs post right the first time.

One of the people I really wanted to meet that day was Kim Vlasnik, writer of the first diabetes blog I found online. When I found it about three years ago, I was in a deep, very not happy place. It was really important for me to tell her how much it meant to me that I found her blog, what it touched off, and that who I am today is a direct result of finding her online back then. That was an emotional moment for me, though I think I hid it well. Oh, and later in the day, I was able to duck into the exhibit hall and see the You Can Do This Project booth. Another emotional moment for me. And I picked this up:
DSC01628
I ain’t takin’ it off either.
 
 
There were also many whom I had met before and were thrilled to see again in this space. People like Karen and Cherise and Kelly and Scott and Kerri and Christopher always light up every room that they enter.

What’s really nice (and yes, I get emotional about this) is the feeling of acceptance I felt that day. With acceptance, I don’t have to have my guard up all the time. I could physically feel the stress going away as the day went on.

So thanks for letting me get all this out. I’m lucky, and grateful that my D-associates are a brilliant, diverse, and accepting crowd. They make me want to be just like them.
 
 
 

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