Category Archives: Advocacy

Discussing the President’s Precision Medicine Initiative.

January 21, 2015 – 10:50 am

Well, he did it. The President of the United States mentioned diabetes in his State of the Union address on Tuesday night:

“I want the country that eliminated polio and mapped the human genome to lead a new era of medicine — one that delivers the right treatment at the right time. In some patients with cystic fibrosis, this approach has reversed a disease once thought unstoppable. Tonight, I’m launching a new Precision Medicine Initiative to bring us closer to curing diseases like cancer and diabetes — and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

I was very excited to hear this. And then, I almost immediately started researching “Precision Medicine Initiative” to see what the President was really talking about. Also, as a #WeAreNotWaiting fan, I was very interested in the last part of that statement, “to give all of us access to the personalized information we need to keep ourselves and our families healthier.”

To be honest, I haven’t found out much about that last part, except that it kind of ties in with the Precision Medicine Initiative idea. What that means is the President is beginning an initiative to further study genome mapping, not only of our personal DNA, but of diseases like cancer and diabetes. The hope is, of course, that if we know more about the genome sequencing of diseases in our bodies, we will be better equipped to treat them effectively. Or possibly cure them.

How successful will the President’s efforts be? That depends on how much funding the initiative gets from congress. And right now, congress is more interested in cutting taxes on people earning 2,000 times what I earn in a year than they are in funding research. Unless it might help someone or some corporation to earn 2,000 times what I earn in a year, all for helping me to continue managing my diabetes as they, not I, see fit.

I’m also concerned about what will happen if we actually find out something meaningful through this initiative. Will that information be widely shared, in the most transparent way possible, so anyone who wants to act on that information can do so, rather than restricting the benefits of the research to those most able to capitalize on the results? That’s a long question, and I fear the answer to it may be just as complex.

Skepticism aside, it was nice to see our President mention diabetes in the State of the Union address. As someone living with diabetes for the past (almost) 24 years, it was gratifying to see the urgency of curing diabetes on the same plane as cancer, which always seems to get more notice.

I really don’t know if the President’s Precision Medicine Initiative will yield any positive results, how long it will take, or if it will get off the ground at all. But I do know this: The more we know, the better equipped we will be to either act on what can be found from mapping the genomes of our disease states; or, the better equipped we’ll be to say it’s still a crapshoot and anything can still happen with my diabetes.

This is how things happen with State of the Union speeches. The President might have a laudable idea, and then congress may support it (or not), and eventually, it may produce meaningful returns. That may sound defeatist in a way, but we have to start somewhere. The President could have left this out of his speech entirely. By including it in his address to congress, he was saying this is an idea whose time has come, and why shouldn’t we learn more?

Why shouldn’t we indeed, Mr. President. Let’s get started.
 
 
 

By StephenS | Tagged , , , | Comments (1)

So Worthy: Diabetes Community Advocacy Foundation.

December 31, 2014 – 9:16 am

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.
DCAF_Logo

Diabetes Community Advocacy Foundation

Originally started as Diabetes Social Media Advocacy (hence the #DSMA hashtag), the Diabetes Community Advocacy Foundation officially became a non-profit organization in 2012.

Founded by Cherise Shockley, DCAF is meant to connect people living with and affected by diabetes, both through social media and in real life. It is everything its name suggests, but it is so much more than that too. Its outreach is many and varied, encompassing initiatives that are well known and not so well known, including:

– DSMA Twitter Chats: Every Wednesday night at 9:00 eastern time here in the USA, friends from around the world get together via Twitter and discuss diabetes. Actually, they discuss their lives, with diabetes as a common thread. But of course, it’s way more than that. There are usually questions and answers surrounding a common topic, and there are questions (and answers) from individuals logging on. With a ton of laughter and encouragement thrown in for good measure. For many, this is the gateway to the rest of the Diabetes Online Community, and for that alone, it’s worth a contribution to DCAF. It always leaves me feeling so happy that I stayed up for it. If you haven’t already, you’re encouraged to join the conversation by following the @DiabetesSocMed Twitter account or the #DSMA hashtag.

– DSMA Live, DSMA Live En Vivo, and DSMA ‘Rents Podcasts: Using a various lineup of amazing hosts, DSMA Live (Thursdays at 9:00 ET), DSMA En Vivo (in Spanish every other Tuesday at 9:00 ET), and DSMA ‘Rents (every other Monday at 9:00 ET) take an hour to focus on one topic or one person. Whether it’s diabetes research, a new D initiative, managing your diabetes, diabetes and exercise, or special and unique events in the diabetes world, these three podcasts will keep you informed and educated. And of course, you’re encouraged to phone in and be part of the talk too. Find out more on any of these and connect to the podcasts by going to the DCAF page on Blog Talk Radio.

– Blue Fridays: A simple way to spread awareness and show support for those living with diabetes, DCAF has been the leader of the Blue Fridays initiative. You’re encouraged to Think Blue – Wear Blue every Friday and on World Diabetes Day. There’s even a Facebook page. It’s an easy way to get your advocacy on each and every week.

Those are just some of the unique ideas that have come from this passionate organization. The recently retired DSMA Blog Carnival and some in-person DSMA Live events are a couple of additional highlights. DCAF is an organization that is not afraid to try something new, not afraid to look toward the next horizon if there’s a way to support and uplift People With Diabetes. If there’s a way to connect people living with and affected by diabetes, Cherise is interested in making it happen.

Would you like to help make it happen? To make a donation to Diabetes Community Advocacy Foundation, simply go here and click on the Donate button:
http://diabetescaf.org/2012/11/supporting-dsma-through-dcaf/
 
 
Disclosure: In the past, I’ve written Blog Carnival posts for DCAF, and more recently, I’ve been honored to moderate a few installments of the weekly DSMA Twitter chat. Strictly pro bono… I am not compensated in any way for doing so.
 
 
 

By StephenS | Also posted in Diabetes | Tagged , , | Comments (1)

So Worthy: You Can Do This Project.

December 29, 2014 – 11:48 am

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.
 
 

You Can Do This Project

From their website, here’s the official language for what You Can Do This Project is all about:

”You Can Do This is a grassroots video movement, created by and for people with diabetes, that provides validation, hope, and encouragement through honest talk.

We are not a registered non-profit, we do not have any corporate sponsorships, and no one gets paid to work on this. We do what we can with what we have (and with the time we have outside of our “real world” jobs) because we are passionate about helping others find peer-to-peer support.”

I will also add this: You Can Do This Project has positively affected the lives of people living with and affected by diabetes by providing a window through which viewers can see that their experiences are not unique; that their challenges are not easy; and that their failures and successes should always be met with support and encouragement.

Started over three years ago by Kim Vlasnik of Texting My Pancreas fame, YCDT Project has, over the years, shared video from Type 1s, Type 2s, those living with LADA, athletes, parents, and just recently, parents of kids that were diagnosed under the age of two. They’ve covered topics like diagnosis stories, diabetes burnout, going to college, and much, much more. The whole spectrum, really. Whatever you’re dealing with, you’re likely to find a video about it that will help you feel less alone.

Look, I know that You Can Do This Project isn’t going to cure diabetes. But for me, just spending a little time there is pretty powerful medicine. And I am far from alone in this belief. Just a look at their media page will tell you how many others find this space pretty therapeutic too.

And don’t forget: This is all being put together, hosted, and promoted (often in person, in various locations) by people working on their own time, free of charge. Doesn’t that make you want to support them all the more? Obviously, any support you can give will make a huge difference.

You Can Do This Project is not a non-profit organization. Instead, it is a for-power vehicle that enlightens and uplifts every single day.

To make a donation to You Can Do This Project, simply go here and join the movement:
http://youcandothisproject.com/donate/
 
 
Wednesday, another look at a diabetes organization worthy of your time and money.
 
 
 

By StephenS | Also posted in Diabetes | Tagged , , | Comments (0)

So Worthy: Diabetes Hands Foundation.

December 26, 2014 – 10:21 am

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.
 
 
 

By StephenS | Also posted in Diabetes | Tagged , , | Comments (0)

Got two minutes?

December 10, 2014 – 1:51 pm

Hi… I just have a couple of minutes during a very busy day, but I need to ask your help once again.

The U.S. Food and Drug Administration is asking us for our take on insulin bolus calculators. This goes back to the public workshop that I attended back in November.

Specifically, they’re looking to us for feedback on bolus calculators. As we know, they’re helpful for people to perform (or double-check) their insulin boluses prior to delivery. During the workshop’s panel discussion, Adam Brown of diaTribe did a fantastic job describing how someone using a bolus calculator, even an imperfect one, was better off than someone using no calculator at all.

Fortunately, Bennet Dunlap has prepared a super-helpful post over at Strip Safely that will help you get everything you need to comment simply and effectively on this docket. Go there, and you can perform your Wednesday dose of diabetes advocacy in a couple of minutes.

The FDA would like you to consider these questions with regard to bolus calculators:

1. How can patients and providers be confident that the insulin bolus values obtained from the calculators are accurate and appropriate for their use?

2. What information do patients and providers need about how a particular calculator works so that they may appropriately use the calculator for diabetes management?

3. How can FDA foster both innovation and safety of insulin dose calculators intended for use by healthcare practitioners?

4. How can FDA foster both innovation and safety of insulin dose calculators intended for use by patients?

Okay… I don’t have a lot of time, so I encourage you to visit Strip Safely and view Bennet’s post. The docket is only open for a little while longer, so time is of the essence.

Don’t forget to tell your story! It’s important to convey your role as a patient or a caregiver of a patient, since no one understands our diabetes the way we do. To get links and additional talking points, go to Bennet’s post. For the record,

Here is the link to the request for comments

Here is the link to comment
 
 
Thanks again for your help, your continued help, in getting the important facts and the right message to the FDA. Happy Wednesday!
 
 
 

By StephenS | Tagged , , | Comments (0)