Category Archives: Advocacy

Faces of Diabetes.

Advocacy, Community, Education, Events

November is right around the corner.  Which is Diabetes Awareness Month.  In other words, a very busy month for diabetes advocates and organizations everywhere.  There will be movements and efforts throughout the month, especially on World Diabetes Day, to promote education on the facts of diabetes.

The American Diabetes Association, launched a social initiative a couple of weeks ago to illustrate what a day in the life of diabetes means to you.  I like initiatives like this a lot.  It gives diabetes a face (or in this case, many faces)  It shows the world that as grueling as diabetes can be, we can look just like anyone else.  It gives it life.  It shows strength.  And hope.    To help spread this initiative, the ADA will create a larger-than-life outdoor projection of the photos in Washington D.C. on World Diabetes Day.  That is pretty cool.   Also, for every photo uploaded to the Association’s Facebook page, CVS pharmacy will donate $1 to the Association, up to $25,000.

Please visit the Facebook page for the A Day in the Life of Diabetes campaign.  Take a look at what diabetes means to tons of people.  And upload your own pictures!  (if you search by name, you should see two of my own entries 😉 )

Big Blue Test.

Advocacy, BG, Fitness, Roche

One of the things that I struggle most with in terms of my health and(or) diabetes management is consistent exercise.  Usually I do well for a few weeks then work hours are longer or I have more things to do and I get off track.  I’ve made a promise to myself recently that I am going to make it a priority in my life no matter what.  What helps me a lot to stay motivated honestly is support and inspiration of others.  When I see someone post about working out or read about the accomplishments of athletes living with diabetes or pass by someone who is running or riding a bike in my neighborhood, I want to get active.

That is why I love the Big Blue Test.  It is a movement started by the Diabetes Hands Foundation in 2010, to help promote the positive affect physical activity has not only on a person with diabetes’ blood sugar, but on everyone’s health in general.  It is so simple.  All you have to do is test your blood sugar, exercise for at least 14 minutes, test your blood sugar again and log it over at http://www.bigbluetest.org.  Those people without diabetes can participate also, just minus the blood sugar readings part.  The best part is this:  if 20,000 entries are logged by November 14th, Roche will donate $100,000 to organizations that will provide life saving diabetes supplies to those who need it the most.

I know together, we can achieve this goal and help those less fortunate than us while helping ourselves stay healthy.  I’ve logged my Big Blue Test three times already this week.  Have you?

Friday Happenings.

Advocacy, Community, Events

Happy Friday everyone!  I don’t know about you but I’m hoping the day goes by quickly so that the weekend can begin 😉  I just wanted to take a few minutes to share some things that are going on in the diabetes community or coming up before we know it!

First off, tomorrow, August 25th, marks the two year anniversary of this here blog.  I cannot believe that two years has gone by already.  I’ve enjoyed writing and sharing very much over the past two years and I hope my contribution to the diabetes community has proved useful for others.  Thank you so very much to my readers, old and new, for making it what it is today.

Tomorrow is also HFCS-Free day.  Leighann from D-Mom Blog proposes that we take tomorrow to make a conscious effort to avoid any food containing HFCS (high fructose corn syrup).  I have more recently become aware of how many foods containing this ingredient and try to avoid it as much as possible.  Mayo Clinic lists some of the possible adverse side effects.  I think it’s a great idea and you can read more about it here at her blog.

Second, in just one month, Diabetes Art Day 2012 will take place.  This initiative was started by my friend Lee Ann in 2010 to create opportunities for people all around the diabetes community to share their story of life with diabetes though creative visual expression.  It is fun!  And easy too.  All you have to do is create any kind of artwork that reflects your diabetes life and share it on the Diabetes Art Day website, Twitter, Facebook, with your loved ones, etc.  Go ahead and put your thinking caps on!

Thirdly, World Diabetes Day is coming up as well, in November.  Another initiative spearheaded by Lee Ann is the WDD Postcard Exchange.  This was started last year in an effort to connect people with diabetes all over the world and raise awareness during Diabetes Awareness Month.  Another fun and easy event, all you do is register on the site, wait to be emailed your recipient’s mailing information, make a wonderful postcard, send it to your recipient and wait to receive one in the mail as well.  Registration is now open for 2012 so head on over to the site and sign up!

Fourthly (is that a word??), Kerri hosted a great post from Harry yesterday about his new adventure of starting a new chapter of InsulinDpendence in Charleston, NC.  If you haven’t heard of them, they are a large (and still growing) group of people who inspire people with diabetes to set personal fitness goals, educate on adaptive management strategies through experience and equip to explore individual capacities.  Pretty cool considering a lot of medical professionals out there do not know how to advise patients on that sort of thing.  I had the privilege of meeting some members of the organization in the winter at the JDRF Research Summit.  Wonderful, inspiring people.  If you’re in the Charlotte area and are interested in helping Harry get a new chapter off the ground, email him at CLT.Insulindependence@gmail.com.

Last but not least, Manny has already begun promoting the 2012 Big Blue Test effort that will be announced in October.  Between 2010 and 2011 more than 10,000 people participated in testing their BG, getting active for 14-20 minutes, then testing BG again.  This raises awareness of the positive effect physical activity has on diabetes management.  This year, they are hoping to make the effort even bigger, with Roche Diabetes Care sponsoring the Big Blue Test once again, to help touch even more lives.  So be on the look out for the official announcement and don’t forget to get your big blue test on!

I hope the weekend is a great one for everyone 🙂

Roche Summit Part 3. Advocacy.

Advocacy, Community, Education, Events, Roche

This post is probably the most difficult to write and I think the most important – finding the right words to describe something as elaborate and essential as diabetes advocacy can be challenging.

First off, being among some of my diabetes family on the 9th anniversary of my father’s passing (due to diabetes complications) was surreal. Here I was, in a room full of 30+ others whose lives are touched by diabetes and representatives of a company whose aim is to make those lives easier. A connection that I didn’t know existed just 9 years ago. Something that was totally unimaginable during his time I’m sure. I couldn’t help but reflect on how things could have turned out differently for him had support like this existed.

Rob and Todd presented to us the Welcome to Type 1 video. If you have not yet seen this video, watch it. It so precisely portrays how attitude has everything to do with how to best cope with living with something like diabetes. It also illustrates how diabetes, unlike other chronic health conditions, leaves most of the care to the patients and not the healthcare providers. For this very reason, it becomes crucial for the patients themselves to advocate for the rights and well being of people living with diabetes. What is advocacy? By definition, health advocacy supports and promotes patient’s health care rights as well as enhances community health and policy initiatives that focus on the availability, safety and quality of care. I don’t see myself as an innovator in the diabetes community. I do not come up with the exceptional ideas that others do or write remarkable books. But I do love to help collaborate on initiatives, provide my extra supplies to those who need it more than me, spread the word of current or future events, connect people, fundraise and donate to diabetes organizations, help introduce new products, share my own story and of course retweet 😉 By doing these things I can achieve forms of advocacy.

Hearing Josh say that “everyone has a bomb in their life that goes off at some point” and “it’s therapeutic to give back” couldn’t have been said better. For most of us, the bombs are the daily struggles of diabetes. For a lot of us, we consider social media a form of therapy. He thanked us for what we do. For providing advice on the little daily things of living with diabetes to people who have questions. For letting others know that normal may not be what you think. For showing that living with diabetes is hard but moving forward is important. When I get emails or comments from readers thanking me for a particular post or telling me that my father would be proud of me for my actions, it touches my heart with a sense of accomplishment. I reached someone and hopefully made a difference to them.

Yes, Roche initiated a gathering of diabetes online community members to discuss how to fill the gap between patient needs and their own company’s contributions.  Did they do it lavishly?  Sure.  Were all the extras completely necessary?  Of course not.  But regardless of how lavish the locations are,  these opportunities are invaluable to help us communicate what is important as a strong group.   However, even without these summits, we are still needed to tell the public just what diabetes is all about. To bust the myths that are endless. To fight for more affordable supplies. To let people all over the world know that they are not alone and you can do this. We are the experts.

Roche Summit Part 1. Overall Impression.

Advocacy, Community, Events, Roche

It’s been three days since I returned from the 2012 Roche Social Media Summit in Indianapolis and I’ve been thinking a lot since. It was an experience with a lot to digest. I think there may be some notion that the diabetes summits held by companies like Roche are nothing but fun and games and hanging out. Before attending, I honestly never thought that. But after being an attendee, I can say it’s certainly not all play and no work. The first morning being in the meeting room, I looked around and saw everyone at their respective table, iPad or laptop at their fingertips, taking notes, tweeting to their followers, sharing what was being learned. Most importantly, taking the summit seriously. Monday was the only full day however activities did begin Sunday evening and lasted throughout Tuesday afternoon. There was a lot packed into less than 48 hours.

20120803-094905.jpg

I’ve heard from past attendees that having speakers wasn’t the tone set each year. Having nothing to compare to, I felt having Josh Bliell and Steve Richert share their stories with us was extremely moving and inspiring. If you haven’t heard of Josh, he is the community spokesperson for the NFL Indianapolis Colts. He is a marine who lost both legs from a bombing in Iraq and although he doesn’t have diabetes, he shared his story of having courage and hope when your “normal” completely changes. If you haven’t heard of Steve, he is a fellow type 1 diagnosed as a teenager, with a mission to climb a mountain every day for 365 days to raise awareness about diabetes. These guys are so admirable. They took a bad situation and made the best of it. Something that everyone should have the guts to do.

We all got to know each other better. When we registered for the conference we were asked to provide a brief description of ourselves. Using those descriptions, they were put on the screen anonymously and we had to guess who wrote it. I have to say that most of them were guessed correctly. That showed me that even though we may not be together in person always, we know a lot about one another from our online relationships. And that’s pretty cool. Roche was getting to know us better as well. As Todd stated, the attendees to these summits play an important role in their partnership with patients. They want to interact and understand the patients. Rob said he sees every day how we motivate ourselves to interact with others and motivate others. To quote him “we want to be the arrows pointing to all of your resources, not competing with them”. This is what separates companies like Roche from others. Their interest and initiative to reach out to patients. They get what the diabetes online community is all about.

Of course there was bonding. And laughing. Crying. Hugging. That was all icing on the cake. There were also serious discussions. Important questions asked. Ideas shared. Motivation gained. All this happened for the good of the diabetes community everywhere.

20120803-094937.jpg

(photo courtesy: Chris Snider)

Disclosure: Roche paid for my travel, hotel and meal expenses for my trip to Indy. They have not however, required any blog posts from any of us. Feedback provided by me is completely my own opinion.

Thank You.

Advocacy, Community, Events, Traveling

I got home tonight from my first ever Roche Social Media Summit in Indianapolis.  It was a fantastic time and I have a lot to process and sleep to catch up on so some feedback will follow in a few days.

But I wanted to start (or end the day) by saying a sincere thank you to Roche, especially Rob Muller and Todd Siesky.  I knew it was going to be a rewarding event but to be in the presence of such down to earth, dedicated and funny people that have taken the time the past 4 years to meet with people from the diabetes community to get their honest opinions, feedback and ideas on what Roche can do for people living with diabetes is very commendable.  It is something that I feel every pharma company for every health community should do.  I was extremely honored to be part of it this year and is something that will stay with me forever.

THANK YOU.

(photo credit: Roche)

First Time.

Advocacy, Community, Education, Events

The past few years, I’ve only heard about events like the Roche Diabetes Social Media Summit or Medtronic Diabetes Advocate Forum or more recently the Lilly Diabetes Blogger Summit.  These are events that are by “invite only” and are usually an expense paid type of thing.  I’ve heard nothing but good things from the people who have attended.  I always thought the attendees were lucky to experience such great opportunities to interact with companies like those and each other in extensive advocacy efforts.  Was I a wee bit jealous?  Sure.  Who wouldn’t want the chance for a paid trip to learn about the works and plans of big diabetes companies and to hang out with diabetes friends??  Was I bitter?  Nope.  The diabetes community has grown and continues to grow dramatically.  The bottom line is that it is impossible to give everyone a chance to attend these events.  And I feel that the people chosen to represent the community are chosen for a reason.

However, fast forward to this year.  I was invited.  I have no idea how but I am one of the fortunate diabetes advocates attending the Roche Diabetes Social Media Summit in Indianapolis in just 2 days.  I cannot express how honored and privileged I feel to have been asked.  I know this is going to be the opportunity of a lifetime.  I am excited to see and(or) meet the other advocates attending.  I am thrilled to get a taste of what Roche is like.  I am eager to see what the discussions will entail.  My intention when blogging and advocating about diabetes, is to support all of those who live with diabetes.  In that effort, I am really going to strive to represent people with diabetes as best I can.  If you have anything at all you would like me to ask or mention to Roche during the summit, please let me know.  If you’d rather not leave a comment on this here blog post, feel free to email me as well: staceydblog@gmail.com.

I love the fact that Roche, Medtronic and Lilly are taking the initiative to work with people from the diabetes community to hopefully come up with a plan on how they can better serve our needs.  I don’t know that other communities interact with pharma companies like this.  But they should.  There is no better way to understand the needs of patients then getting together a whole bunch of them at the same time for an elaborate dialogue.  Most of us will be tweeting about the event so please follow #dsummit12.  Of course I will share my experience once I’m back.  But most likely not for a few days after I return since the schedule is pretty packed and I have to go to work the rest of that week.  That thing called sleep I love to do?  Not on the agenda until next weekend 😉

Have a great weekend everyone!

(Not So) Wordless Wednesday.

Advocacy, Community, Education, Minimed

I am an adult.  Yet like stated in my blog bio “I love cute furry animals (of both the live and the stuffed variety!)”  Evidence of this is my own Build-a-Bear collection pictured below.

Since I already had my own stuffed animal bunch, when I heard about Medtronic’s Lenny the Lion, and especially that he was available for purchase, of course I had to get myself one!  He is the softest, most cuddly lion around 🙂

I think it’s great what he stands for and wish when I was a little child with diabetes, something like Lenny was around.  But since it wasn’t, I’ll just have to enjoy him as an adult 😉