Tag Archives: Diabetes Community Advocacy Foundation

Join us for #WDDChat16!

So, it’s November and all. You know what that means:

24 hour #WDDChat16 Twitter Chat November 14!
Let me be the first to remind you that Monday marks another World Diabetes Day, and among all the other happenings around the world, much of the world will be checking in to the diabetes talk on Twitter. Some people, like me, multiple times.

If you’re a seasoned veteran of the #DSMA chats, terrific. Consider this your friendly reminder. Just remember to use the #WDDChat16 hashtag for this special event. We’ll see you Monday.

If you’re not familiar with the Twitter discussion, or if it’s been a while and you don’t remember, here’s the deal: each hour of the chat will have a different topic, and will be moderated by a different host. I will be your moderator from 8:00 a.m. to 9:00 a.m. (EST in the USA). The topic: My Diabetes House. My Twitter handle: @StephenSType1

Each hour’s chat will include several questions asked by the moderator, and participants are encouraged to reply. And chat with other participants while they’re at it. For a list of the WDD hosts and topics, CLICK HERE.

If you’re new, don’t be discouraged. The #WDDChat16 chat will be a fun atmosphere that welcomes everyone living with and affected by diabetes, regardless of your type of diabetes, regardless of how long diabetes has been a part of your life. It really is the fastest hour of the week when the chat happens at its regular time on Wednesday nights from 9:00-10:00 (EST). On World Diabetes Day, the lively conversation will continue for 24 straight hours.

The moderators on Monday include some of my favorite People With Diabetes. If you don’t already, I encourage you to get to know them too. People like Christel Marchand Aprigliano, Anna Norton, Chelcie Rice, Kerri Morrone Sparling, Kelly Kunik, Chris Clement, and others. Over the years, I’ve seen participants from every continent except Antarctica.

Don’t have a Twitter account? No problem. Go to twitter.com and create yours in about 15 seconds.

To join the chats, follow the #WDDChat16 hashtag on Twitter, or use one of the several hashtag feed web sites that will link with your Twitter account. That way, everything in the chat just keeps flowing, and you also have a space on the same page to Tweet away yourself. I like to use this one: http://tchat.io/rooms/WDDChat16

Then just jump in and enjoy the conversation!

If you’re still not sure how this all works, CLICK HERE and send me an e-mail. I will help you get going or answer your questions.

This is truly one of my favorite things about November each year, and like other years (this is my 5th!), I hope you will join me during the 24 hour (including 8:00-9:00 a.m.) World Diabetes Day Twitter Chat sponsored by Diabetes Community Advocacy Foundation.

Special thanks to Cherise Shockley for coordinating the chat every year, and for her tireless efforts to bring our community together, one conversation at a time.

Talking about Cousin Spammy on DSMA tonight.

I’m not sure I can define diabetes spam exactly… but like Supreme Court Justice Potter Stewart once proclaimed regarding pornography, I know it when I see it.

We’re going to be talking diabetes spam on the DSMA Twitter Chat tonight. What does it look like to you? How does it make you feel? How do you handle it? And many more aspects of what spam does to our already overworked eyeballs.
From ridiculous snake oil cures to workout ads that promise to “reduce diabetes” (ummmm… it’s still DIABETES), we’ll be riffing on what really bugs you regarding quack dietary supplements and what your co-worker heard on the TV last night. We’ll talk about what everyone is doing about the stupid e-mails they’re getting, and maybe a little about what we’d like to do about all these snake oil remedies and the people who tout them.

Diabetes spam is kind of like the stoner cousin at the family get-together. Eating all the non-carby good stuff you brought while leaving your aunt Ginny’s undercooked brussels sprouts for you on the buffet. Eyeing your significant other with a little too much gusto. Borrowing a fiver while promising to get it back to you next week, and finishing up with “We gotta hang out more often, cuz!”. Yeah, right. I’m not a kid anymore, cuuuzzz.

So catch up with me on Twitter tonight (all the details are below) and we’ll compare notes, laugh a little, and generally dis’ about cousin Spammy. He’s got it coming… let’s serve it up beginning at 9:00 eastern time in the USA.
Living with diabetes? Living with someone living with diabetes? Join us for talk, support, encouragement, empowerment, and more during the DSMA Twitter Chat every Wednesday night at 9:00 Eastern time (USA). Follow the @DiabetesSocMed Twitter handle and/or the #DSMA hashtag and join the conversation!
I also find this link via tChat helpful.

The DSMA Twitter Chat is sponsored by the Diabetes Community Advocacy Foundation, Cherise Shockley, Founder and CEO.

So Worthy: Diabetes Community Advocacy 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 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:
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.

Clinical trial participation: The one helping the many.

This post is appearing today over at the Diabetes Community Advocacy Foundation website.
Clinical trials… what’s the big deal?

Everyone knows that clinical trials are important.

What about clinical trial participation?

Full disclosure: I’ve participated in three clinical trials in the past year, the last testing an artificial pancreas device. More on what that means to me below.

There’s absolutely no question that research and discoveries that happen as a result of clinical trials is of great importance to all of us living with and affected by diabetes. That means that participants in clinical trials are a vitally important part of the research and development process. Critical clinicals, if you will.

Don’t believe me? Think about the important discoveries that would not have been made available to the general public without the assistance of clinical trial participants. Insulin pumps, continuous glucose monitors, meters and test strips, long-acting and fast-acting insulin. Better syringes, infusion sets, reservoirs, and sensors. None of these could have made it to our D-lives without clinical trial participants who made it their mission to try them first.

Those are just the good ideas that made it through the testing and approval process. What about the bad ideas? If not for clinical trial participants, bad ideas would… well, I don’t want to think about it. Let’s just say that without patients willing to play an active part in discovery, we might not know the good ideas from the bad ideas until it was too late to do anything about it. As one of the doctors on my last clinical trial put it, there is no bad data. All data is good if it helps us get to a great conclusion. Who is the source of that data? Right… patients who participate in clinical trials.

Need another reason to participate? How about the great feeling that comes from taking an active part in making things better for people living with diabetes? Many of us don’t have the resources, the networks of supporters, or the money to take on meaningful advocacy initiatives on our own. But your participation in a clinical trial means that you, just one person, can help make a difference for more people than you’ll ever know, and for a long time to come. Oh, and the money thing: Many entities compensate patients for participation in clinical trials. Don’t expect to get rich. But if you need an extra incentive, there it is.

In addition, patients who participate are screened thoroughly prior to the start of any study. Once the trial is underway, doctors and nurses watch you closely. Partly to see how the research is going, and partly to make sure that you, as a patient, are free from adverse reactions or unintended consequences of whatever is being studied. The goal of testing is never to have the study team watch you get worse. If you don’t feel comfortable participating at any point in a clinical trial, you can always opt out at the very moment it begins to be too much.

I can think of no other form of diabetes advocacy where one person can have such a profound impact on the future for so many people. For me, it’s been exciting and fulfilling. In a way, I feel like a researcher myself. If you’re one of the many patient heroes participating in clinical trials, Bravo. Thanks for moving the needle for all of us. If you’re thinking about participating, or if you’ve already decided to put on the cape and begin participating, here are some links you might find helpful:

The USA’s National Institutes of Health has a complete list of clinical trials taking place all over the USA, and even some outside of my country. To find them, go to www.clinicaltrials.gov and enter “diabetes” into the search box.

In the United Kingdom, the UK Clinical Trials Gateway is a great resource for finding out about trials happening all over Europe. To perform a search and find out more, go to http://www.ukctg.nihr.ac.uk

JDRF has a very helpful web page that lists multiple sources for registering and finding out about clinical trials. Just go to www.jdrf.org/research/clinical-trials/ to find out more.
If you’ve participated in a clinical trial, or if you are participating in a trial, won’t you leave a comment below?

February DSMA Blog Carnival. What is an advocate?

The February DSMA Blog Carnival picks up on the advocacy theme that’s been prevalent in our community in the first two months of 2014. The question is:

What is your definition of an advocate?

Officially, dictionaries define an advocate as a person who speaks or writes in support or defense of a person, cause, etc. But an advocate is so much more than that.

To begin with, an advocate is someone who identifies with a need, an issue. They can see a problem, and they realize how this problem affects people. At this point, the need of others becomes their cause too.

An advocate wants to be part of the conversation surrounding their cause. They expect to be part of the solution. They protect those who are affected by the negative impacts of the issues they’re facing. They bring a voice to the voiceless, a spotlight to shine on their cause and the people affected by it.

Advocates marshal resources and raise money and set up tables and hand out information and give talks, so people not affected by an issue have an opportunity to become part of their team, the team fighting for improvement and empowerment for all who are part of our diabetes community.

What is an advocate not? An advocate is not someone who is afraid of the word “advocacy”. Admit it… that word makes you cringe a little, doesn’t it? Let’s get rid of the stigma of this word, and the feeling it gives us when we read it or speak it. Advocacy, advocacy, advocacy. Get comfortable with it. Advocacy, big or small, is good, and it should make us feel good when we define it through our actions.

In addition, advocates are not people who worry that they’re not good enough, or influential enough, or important enough to do anything meaningful. Here’s a news flash: You Are. They’re not concerned that whatever they’re doing isn’t big enough or special enough to be helpful. Fact: If you’re doing something to further the cause, no matter how small your effort is, you are a champion and worthy of the definition “advocate”.

Advocates are those who possess the empathy to identify with a need, and the resilience to do what they can to eliminate the need. They further the issue they’re fighting for, and they support and empower others who are doing the same. They are not afraid to do something that will help, no matter how small or big.

Advocacy comes in all forms. Bravery does too. If you speak honestly, with a focus on making things better for people living with and affected by diabetes, you are an advocate. And I thank you for what you’re doing for me.

This post is my February entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/02/february-dsma-blog-carnival-3/

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