Continuous glucose monitoring is an important part of my diabetes management. I don’t like that people covered by Medicare are being denied coverage for this useful tool.
Winter Sports Camps for Kids & Teens Living with Type 1 Diabetes
There are fundraising and full scholarship opportunities to help with registration costs, if necessary.
The DSMA Team spoke to Sean & Mollie back in May of 2013.
P.S. – Sean and Mollie Busby live in the same small city in Montana (population ~ 6,600) that my aunt and uncle do! What are the chances? I love how small the world is sometimes.
Education is a huge part of living with diabetes. Unfortunately, many people with type 2 diabetes are diagnosed then leave the office with little or no education.
If they are lucky, they’ll get back to their doctor’s office for a session with an educator a couple of weeks or a month later.
But what happens in-between? Imagine the questions!
What can I eat? How do I use this blood sugar meter? What do these numbers even mean? It’s paralyzing.
So my clever friends at mySugr have come up with a solution.
Introducing mySugr Academy.
The first course (10 levels with animated videos, articles, tips, challenges, and more) is geared towards type 2 diabetes. We have type 1 stuff on the roadmap, too.
We hope this online diabetes education tool helps fill the gap between diagnosis and initial education, and maybe even proves to be a powerful supplement to traditional diabetes education.
I’d love to know what you think! I’d also love to know more about your diagnosis/education experience. Please leave a comment, or send me a private message if you prefer.
Happy World Diabetes Day!
What does the FDA need to know?
The FDA will host a discussion between the diabetes community and senior FDA leadership from both the drug and device groups.
The topic? What does the FDA need to know about living with diabetes?
The discussion will be available via live webcast from 1-4pm ET (registration details coming soon).
The event will include a live panel of patients, both T1 & T2, and representatives from ADA, JDRF, and diaTribe.
As a community, we have a huge opportunity to present the many challenges we face each day, and it’s important to let the FDA hear YOUR opinions and make sure they’re part of the discussion.
Please consider sharing five minutes of your time to complete the survey. You’ll be making a huge difference in the world of diabetes.
The survey is only open for about FIVE DAYS – so please, do not procrastinate!
To say Doug Masiuk likes to run is like saying Scott Johnson likes to drink Diet Coke.
Doug is all about empowering people with diabetes through his love of running. Not long ago he ran across America, and now he’s taking on another amazing challenge. We’re talking with Doug tonight on DSMA Live about what he’s up to. I hope you’ll tune in and hear about what you can do to help keep him moving.
Learn more about Doug and his mission at 1Run.org.
A small group of people who I highly respect asked for some help in spreading a message. If any one of these folks asked me, individually, for help, I’d not hesitate. So when they approached me collectively talking about how we could use social media for social good, I was all in.
Specifically, they’re looking to help the Life for a Child program, which is an International Diabetes Federation program aiming to take “contributions from donors [to] go to established diabetes centers enabling them to provide the ongoing clinical care and diabetes education these children need to stay alive.”
The idea was to take the typical “dozen roses,” so popular on Valentine’s Day, and save just one rose to spare the life of a child. “Spare a Rose, Save a Child” is simple: buy one less rose this Valentine’s Day and share the value of that flower with a child with diabetes in the developing world. Your loved one at home still gets flowers and you both show some love to someone across the world who needs it.
Lee Ann Thill is one of my favorite people around. She is super smart and plugs into the emotional side of life with diabetes with experienced perception. She’s been wrestling with type 1 diabetes for a long time. She get’s it.
Looking to take her smartness to the next level, she’s gone back to school (hello, Dr. Thill!). She’s already 18-months into her doctoral program and has launched a pilot study that she hopes to develop her dissertation around. The pilot study is looking at type 1 diabetes and food and body issues — something that is probably more common than we might think.
Please take a look at her post, “Type 1 Diabetes + Food & Body Issues + Social Media + Creativity = VIAL Project“, for more details and some background.
You can help by spreading the word about her pilot study, or even participating if you feel that it fits you.
Today’s post is intended to help Bennet spread the word about a survey on MyGlu. I am a supporter of what the T1D Exchange (of which Glu is a part of) is all about, and am happy to help whenever I can.
Straight from Bennet’s post:
A few days ago I wrote about research were patients were not seen as a stakeholder in research. There were some good comments and I encourage you to go read them. If researcher are part of the problem so at times maybe are patients. I think at times we don’t participate as much as we should (arguably because we don’t see the results as being to our benefit or even accessible.) We need to step up when we can. Here is place we can.
Here is how to share your voice:
- Join Glu www.myglu.org (if you haven’t already.)
- Scroll down to the bottom on the home page, in the glu u section click October’s Survey.
- Look over the terms and agree as appropriate, this is being run by real researches so yes there is a real consent process. (I think that approachable research is a good thing). Enter you password so they know it officially OK with you.
- There are a number of questions each has its own page. A few of pages is a little cumbersome yes but it is a good start and an important topic.
- Participate, spread eh word and help make it better.
Full disclosure. I was part of a group that offered views on how to start this process and communicate it to the DOC. I would love to see it succeed not because I had a tiny part in getting the ball rolling but because I think patients voices need to be bigger part of the research process. Here is a chance to do that. Lets all help make the effort a success so they keep doing it.
Why not parents? As I said this is being done by real researches with review boards and all that that involves. Doing research with kids, even parents sharing information about their kids is anther level of dotting I(s) and crossing T(s). It should be. Kids deserve to be protected with a little extra diligence. In the mean time parents of T1D kids share this with fiends in the adult T1D community OK?
James Ward is in jail, and is being killed one meal at a time. I saw the story in diaTribe last month and wasn’t quite sure what to think about it. Mr. Ward is, by no means, the picture of a model citizen, but that doesn’t mean he has to surrender the right to adequate healthcare while incarcerated.
Kelly Close and her team at diaTribe imagine that this situation is not unique, and that many inmates with health issues are not properly cared for. This is certainly not the first time I’ve heard of dangerous diabetes care in prison.
According to Philip Baker, a retired public health administrator in Austin, TX, “There is a strong belief in prisons that healthcare is a privilege, and it can be yanked. But that’s not the case. The felon is to be incarcerated but not mangled medically.”
I know this is a touchy subject for many. All I’m asking is that you take a look at the petition. Whether you sign it or not is nothing I need to know about.
More details can be found in diaTribe’s most recent issue.
The Diabetes Scholars Foundation does amazing work. They raise money to help get families and young adults to Friends for Life conferences. As if that isn’t enough, they also raise money to get young adults to college. I’ve written about what they do in the past. I am a big supporter of them, and appreciate all of the hard work they do.
At each Friends for Life conference, Diabetes Scholars holds some sort of fundraising event. I have attended for the past two years. Each year, at each event, I am blown away by the generosity displayed. The money raised at the Friends for Life events goes directly to bringing families and young adults to future Friends for Life conference.
These conferences change lives. They change lives. Don’t take my word for it. Have a look at just some of the blog posts in the diabetes online community about this year’s conference.
I’m blown away by the items that were donated, I’m blown away by the number of people that attend, I’m blown away by the money raised. I’m just blown away by all of it.
I’m writing this to give you an idea of what exactly happens at a Diabetes Scholars event. Not enough people know about it, and that is one small area where I can contribute. Sharing news of good people doing good work is something I am happy to do.
There is a live auction, complete with an auctioneer!
There is also a silent auction, with donated items lined up, from end to end, on both walls. The number of items given to help bring people to Friends for Life is amazing. I grabbed a few pictures, but they don’t do the event justice.
I was able to snag, with the help of Kelly, a cool necklace for my wife, for about $25. A great deal, and the money goes towards a great cause. I only wish I had more to spend!
(Big shout out to Jeff Mather for helping me figure out how to work my blog…)
How did they do this year? Straight from Mary Podjasek, just a few days after the event (“Howl” was the entertainment – dueling pianos):
After paying Howl and the Marriott, it looks like we cleared $36,000. This means we can bring 25 families and 5 young adults next year. This year we brought 22 families and 7 young adults but had almost 100 applications. We would love to one day be able to bring everyone that applies. There is such a huge need. Thanks to everyone who helped to make our event such a success. Let’s try for $75,000 next year!!
Way to go! As she said above, there is such a huge need.
How can you help? Spread the word. Donate auction items. Donate money. Attend their events. Spread the word some more. There are lots of ways you can help, even if you are not in a position to help financially.
Not enough people know about this great organization and what they do. That is something I can help with. So can you.