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Jeffrey Brewer from JDRF at Roche Social Media Summit

Chris Stocker 3 Comments

My second part of my summary for the Roche Social Media Summit 2011 is going to be about the JDRF.  My history with the JDRF is long and in a good standing relationship.  I have volunteered a lot of my time with the local JDRF chapter and have donated a fair amount of money.  When I was doing consulting as a full time gig, I was donating 10% of all of my contract service fees to JDRF and anywhere from 20-50% of my affiliate commissions to JDRF.  I still do the same, I just don’t do as much contract work as I once did last year.  Recently, I had started to wonder if I was donating to the right place, maybe I should be sending it to the DRI instead.  I am very comfortable with my local chapter, but the national, ehh, I just wasn’t feeling it.

Jeffrey Brewer JDRF PresidentSo when I heard that Jeffrey Brewer was going to be speaking to us at our lunch on Thursday, I was like…. whatttt??!!?? The President of the JDRF is going to be here, speaking to us?  Awesome.  I was so excited to hear what he had to say.  I know that a lot of the time, speeches are scripted, and that is fine, because if you follow through on what you say, then it’s all good, if you don’t, well than you will obviously be held accountable then.

There were a lot of great things that Jeffrey touched on, but I wanted to just get into a few.  One was the fact that he mentioned they are re-branding themselves strictly as, JDRF, and not the Juvenile Diabetes Research Foundation.  What does this mean?  It means shedding the “Juvenile” part and focusing on Type 1 diabetes, and not just the Juvenile.  Don’t get me wrong, I want to make sure the kids are well taken care of, and like Trick Daddy says, “Love the kids”.  This shows me that they will be looking at the needs of type 1’s overall and not just “juvenile”, so I feel that they will be able to reach a further demographic, primarily, adults with type 1.  This is the area that they have been lacking and has left me wondering what the organization was doing directly for me.

The quote that stuck with me the most out of his entire time speaking was, “I’m all for a cure, but let’s do something about this now.”  I couldn’t agree with this more.  I always felt that the JDRF was focused on the cure, but didn’t focus much time on living with the disease and doing things to help during the time before a cure is found.  I’m living with this disease today, tomorrow and the next day, so I want things to be better for me now, and I hope and pray for a cure when it comes.  That quote made me gain a lot of respect for Mr. Brewer.

The other reason that I trust Jeff Brewer and his talking points is the fact that he came right out and said that he has a child with type 1 diabetes, but also that he made a lot of money in technology at an early stage of his life, so this isn’t about money for him, it’s all about the end results.

So, to end this post, let’s discuss what you can do now.  Reach out to your local JDRF chapter.  Let them know what items you would like to see them do more of.  But don’t just demand, offer to help with these items.  Offer to come up with the ideas, and plan, and volunteer and do what you have to do in order to get these tasks done.  I recently e-mailed my local chapter and asked for a list of dates of all of their events for 2012 and am waiting on the same list from the local ADA chapter and if there are any large events on the same day, then I am going to bring that to their attention (if they don’t already know).

Just remember, do what you can today to create an Outrage for Diabetes.  This isn’t just an IDF motto, this is for all diabetes related items.  It’s time to fight back against diabetes.

Help the International Diabetes Federation Create a Diabetes Outrage

Chris Stocker

Before going to the Roche Social Media Summit 2011, there were groups and organizations and projects that I had heard about, but did not know a lot about.  One organization that I was aware of and some of the things that they were doing, primarily World Diabetes Day, but other than that, there was not much else.  The first IDF presentation that was given at the #dsummit by Isabella Platon, the Head of Communications for the International Diabetes Federation. I was not very impressed with at all.  I feel very disconnected with the IDF, and I do not like that.  I believe that it was Scott Johnson who brought up the same point and even brought this issue up during the Q&A session.  I just don’t think that the IDF was prepared for what they were going to get from the #dsummit crew.  Unfortunately, not all companies get social media, and the IDF is not there yet, but I think that we can work with them to help them “get it”.

Another item that was brought up during the initial IDF session was about the idea of getting the blue circle out to the public more and get more awareness and understanding of what this blue circle thing is.  Isabella spoke about a process that needs to be taken to go through all of the companies that would like to partner with them to do this, such as the cola companies of the world and companies that make processed foods and that the IDF does not want their symbol on those items.  I do not agree, at all.  Why would we NOT want to put that blue circle on let’s say a Pepsi can?  If somebody is drinking a lot of Pepsi and eating a lot of processed foods that are not good for you, don’t you think it is a good idea to have that blue circle on there that gives them an awareness of diabetes and that possibly be at risk for diabetes.  I think that this is a great idea, and I think that they should not have such strict standards.  IDF is not sponsoring them, they are sponsoring IDF.  Anybody agree / disagree?

International Diabetes Federation PresidentThen came dinner on Thursday night and my entire perception of the IDF changed.  Not only that, but I was more motivated at that point then any other time in my life.  I don’t even know exactly where to begin.  We were told that the President of the IDF would be attempting to swing by and say hello.  Well, did he ever stop by and say hello…..and more.

Jean Claude Mbanya walked around the room and introduced himself while we were all eating and then he took over the room to just give us a quick talk.  I could not take any notes during this time because I was so focused on exactly what he was saying, so I will leave the statistics that he spoke about to some of the others bloggers.  What I want to focus on, and I think everybody that was at this event will be focusing on, and I hope that everybody who is reading this will be focused on as well, is creating a noise, a buzz, a loud ass constant OUTRAGE about diabetes.  I’m talking about the outrage that you see from people fighting for AIDS policies, handcuffing themselves to a pole out front of an elected officials office (try not to get arrested).   But this is the only way that our voices will truly be heard in the masses.  Blogging and social media is only one part of this situation, we have to continue this battle online, but also take this offline.  I am now starting to get into something totally different that I will be discussing later on in the week, which by the way, this will be a 5-7 part series of blog posts that all discuss the Roche Social Media Summit.

Jean Claude Mbanya was very motivational when speaking on stories about how children in small villages in Africa do not have access to medications and insulin and die just because they are born in the wrong area of the world.  There are also areas within the United States that put you at a disadvantage just because you were born there.  There is an upcoming United Nations meeting coming up later this year and diabetes is not even on their radar.  From now until then, we have to put diabetes on the radar.  If I am not mistaken, I believe that Roche Social Summit team would be more than willing to help with who we can contact in regards to this.

Here is one of my goals.  I want us to be able to get diabetes on the radar.  I have done some fact checking, but you can do more and I will be more than happy to update this section of the post with a correction, but I do not believe that our President is making diabetes an issue with the UN, bad mistake.

Who is in?  Who’s ready to make some more noise and get crazy and wild and loud about this diabetes stuff.

Please take an additional 2 minutes and watch this video and please pass along:

 

 

Schedule of Roche Social Media Summit Posts

Chris Stocker

Some of you may have been aware that last week I was at the Roche Social Media Summit in San Diego, CA (Hashtag #dsummit).  For those of you that were there, I look forward to reading all of your follow up posts, please tag your blog posts with the hashtags so we can read them all.  To those that were not there, I hope that you were able to follow along with everyone on Twitter.  I think that next year there will be more of a focus on getting a better quality and less lag streaming video of the event.

I am going to try my best to cover as many as the topics that were discussed as I can.  I plan on doing a week long, 5-7 part series about this.  Here is the schedule:

Tuesday – International Diabetes Federation

Wednesday – Jeffrey Brewer, President JDRF

Thursday – Dan Kane, VP Marketing Roche

Friday – Glucose Getaway, Dr. Polonsky

Saturday – Relationship Building with DOC

Sunday – Taking the “O” Out of DOC

Monday – FDA Discussions

I am trying to type most of these posts while I am flying back from San Diego to Atlanta for a connecting flight, so it is a good 6 hours to allow me to write, write, and write some more.  It is becoming difficult though because I think Roche made a mistake, they booked me a first class flight.  I have never flown first class before, so I was actually a little nervous at first because I didn’t know what to expect.  But, I do see that my perception of the people who fly first class is still the same, bunch of arrogant pricks.  There are a few that aren’t because they probably don’t fly first class all the time, like me.  I just wonder what they do.  Anyway, getting side tracked, but they also have free drinks, food, and movies.  I just finished watching Cedar Rapids (not so good) and am currently watching The Dilemma, so I am becoming distracted.

Sorry, I got off subject there for a while. But I hope that you all come back throughout the week because I have a lot of things that I think you will like. Some great ideas were brought up at the #dsummit and some new projects that we need to start working on like yesterday, so let’s get to it!

 

Why Do We Still Need to Code These Days?

Chris Stocker 6 Comments

I have tweeted and posted a few times lately that I am switching back to the One Touch Ultra strips from my Freestyle Lite strips because the insurance company is charging 6 times the amount, $25 as opposed to $150.  I had an older One Touch Ultra Link meter from about 3 years ago that I had used a few times, but of course the battery was dead in it when I went to use it.  I was looking all over my house because I knew I had to have had another One Touch meter somewhere around the house.  And then I found it.

One Touch Ultra MiniThis nice, small, convenient blue One Touch Ultra Mini meter.  I was all excited and ripped open a vial of strips and stuck it in and pricked my finger and put my blood on the strip and….. nothing happened.  Hmm, what is going on here, does this meter not work also?  Oh, I know, I have never set it up, so maybe I just have to put the date in it.  So I start going through the numbers and I stop at 6 because it is June ya know.  Then it shows me flashing lines which means insert blood onto strip. WTF is going on here?

OOOOHhhhhhhhhh yeaaahhhh. The One Touch Ultra strips still require coding!  I had been using Freestyle Lite for so damn long, that I totally forgot that there was even such a thing as coding.  I hate coding, why do I have to code my machine?  Why can’t I just stick a strip in, insert blood, and bam, it reads my blood sugar?

 

One Touch Ultra Strips Ordered

Chris Stocker 2 Comments

I mentioned previously that I was switching to One Touch Ultra test strips instead of using the Freestyle Lite strips.  The reason is that Medco changed the Freestyle Lite to a tier 3 which is $150 for a 90 day supply, as opposed to One Touch Ultra’s which are only $25 for a 90 day supply.  I called the pharmacy today to see what I had to do in order to get the new strips ordered.  It seemed like it would be an easy process.  The customer service rep was very nice and helpful, so thank you for that, because unfortunately there are a lot of bad diabetes companies out there, trust me I worked for one for 3 1/2 years 🙂

There was one small issue, there was a limit of 6 boxes of 100.  Well I test 8-10 times a day, thats 240-300 a month, so that’s about 900 strips for 90 days, the math doesn’t add up.  The customer service rep explained that my doctor can override this, it will just be an additional step.  Well, about 30 minutes later, I had a phone call from the doctor, that they called in the prescription and that they also requested the 900 strips as opposed to the 600 limit.  It is so great to have not only a doctor that cares, but a doctor that lives with type 1 diabetes and uses an insulin pump herself.

Well, just like the other night, the Miami Heat and Mavs game is on, so that is it for tonight’s post.  Plus I just got done with a Twitter #seochat tonight.  If you like search engine optimization, I suggest you tune into this weekly chat on Thursday night.

Booked for Roche Social Summit

Chris Stocker 4 Comments

Unfortunately, I have gone through one of those stages where I haven’t been online at all.  No blog posts, no tweets, no Facebook updates, nothing.  I hate when I go through these time periods, but sometimes it just gets tough to fit all this stuff into the schedule.  I have so much that I want to blog about and talk about, but just wish I had a little more time in the day to do it all, don’t we all though?

Onto other things, I finally got my travel schedule booked for the Roche Summit.  I am excited and can’t wait to meet all of you who are going.  Unfortunately, I have to cut out a little early on Friday because of the time of my flight.  I have never been to San Diego, so I look forward to seeing part of the city.  I’m still pissed at Budget car rental for screwing up my plans last night by not allowing me to rent a car to get to the Roche Social Media Summit.  Guess what Budget, you can’t stop me this year!

Well, this may be one reason why I haven’t had much of a chance to blog or tweet as much.  My dog needs to go to the bathroom and the Heat- Mavs game is on, so it’s off to watch that.

Have a great night everyone!

Meetings Scheduled with Local Government Reps

Chris Stocker 2 Comments

Following up with what I posted last night about the e-mail response from US Senator Bill Nelson, I wanted to get feedback from the DOC about your success and failures of reaching out to your local reps.  I have some meetings coming up with local reps, and I don’t know exactly what I am going to do.  I told them before setting meetings, that I don’t have all the answers or all of the best ideas for, but just getting an opportunity to bring diabetes to somebody with some power is what is most important.

On a local level there is not much that can be done.  I am meeting with the local city reps, so I can’t ask for their help in getting funding for the FDA to proceed with research on the artificial pancreas.  But I will be asking them to be more involved in local JDRF and ADA events.  If need be, I will speak to large groups of locals about diabetes and get some truth to these people instead of the false “facts” that they are hearing on Oprah and Dr. Phil and Dr. Oz.

I am asking for your help DOC…what items have you had success with on a local level.

I look forward to hearing your comments and suggestions.

E-mail Response from US Senator Nelson (D-FL)

Chris Stocker

A few weeks ago I was inspired by a social media victory when a fellow DOC member had written a letter to their representative and eventually they were granted a meeting with him.  After that, I decided to send an e-mail to every single one of my reps.  Whether it was on a national level (to discuss FDA and the artificial pancreas) State reps, and even the most local reps.  I received quick responses from most of the local reps within 48-72 hours.  I did not hear anything back from the two Senators….until today.  And let’s just say, I wasn’t very happy with the response.

First, I could tell that it was an automated response, and most likely not even from him.  The first two sentences mentioned my concerns about the FDA and the artificial pancreas and funding for diabetes research.  After those two sentences, it went straight into campaign rhetoric.  It was mentioned that he will take this into consideration, but his main focus is working on a budget that will help reduce the national debt and work on funding for public education.  So, basically you’re saying that theres no room or no time left of yours to deal with the diabetes issue?

That is why you, as a Senator, have a lot of aides.  Because you may not have the time personally to deal with this issue directly, but one of your aides can speak with people about diabetes, and some of the major issues that are out there and then during one of your meetings, it can be discussed.

I was not a fan of Senator Nelson to begin with, but as the one with power, I had to reach out to him.  I always said that, it doesn’t matter on a Federal level, your voice is never heard.  Unfortunately, this is another example of that happening.  When you are ready to discuss the importance of diabetes Mr. Senator, I will be hear with an open mind wanting to discuss what you can do to better the lives of the millions of diabetics out there.

Thanks.

Switching from Freestyle Lite to One Touch Ultra…I Guess

Chris Stocker 3 Comments

I have not had an appointment with my endo in a really long time.  The last 3 appointments that I was supposed to have were either cancelled by myself or by the doctor because of scheduling conflicts.  I think that the last one that I had was in December.  That also means, that is the last time that I got my blood work done.  I had a script to get the blood work done for each of the appointments, but I never did it.  Now I have to have the office mail me another script because they are only good for 30 days.  Sometimes this gets annoying, but it’s all part of living with diabetes I guess.  And since I have a diabetes blog, I’m allowed to bitch about it!

My appointment is scheduled for later this month, don’t ask me when, because honestly I don’t know.  All I know is that I have to get blood work done this weekend.  I have not been the best diabetic in the past few months, but I’ve been getting better.  I’ve been eating a lot better and I have also been exercising a little more.  Walking our new dog really helps add some exercise into my life.  My biggest concern for this appointment is that I need a new prescription for my testings trips because I am almost out, and I need to switch to a different brand.  Why am I switching?  Because I refuse to pay $150 for a 90 day supply for Freestyle Lite when I can get a 90 day supply of One Touch Ultra strips for only $25 for a 90 day supply.  Freestyle Lite strips are my favorite.  I have used just about every brand that is out there… that was one of the few perks of working at a supply company for three years…. which by the look of it, they will be going out of business soon, but that’s a whole other side story.

So basically, my insurance company is forcing me to switch to another brand.  I used to use the One Touch strips before the Freestyle Lite came out, but then I was hooked.  I just like it so much better.  There was also the whole counterfeit strip fiasco that happened several years ago, and recently again.  (I can’t go too far into this, that shitty company I used to work for may try to sue me). My endo always asked me why I didn’t use the One Touch meter because it links so easily with the Medtronic insulin pump that I use.  *Sidenote* I am notorious for just guessing my blood sugar or just punching in a bolus number for my pump, and not allowing the pump to do the calculations for me*  So my  doctor felt that this would solve that issue.

I do plan on using the lancing device from the Freestyle Lite meter though.  I don’t have to worry about lancets because the insurance company sent me 1,000 lancets in my last order, and I change it overtime I open a new bottle of strips, so that is like 1-2 weeks, so I should be set for a good amount of time.  That was a mixup on their part anyway…they sent me 600 strips and 1,000 lancets.  Does that make any sense?

Well, I think I covered just about everything that I wanted to.  I’m going to finish my wonderful ceasar salad i’m eating right now and then get back to work.  Down 4 pounds in month of May, have to keep it up.

 

A New Puppy Reminds Me of Diabetes Diagnosis

Chris Stocker 3 Comments

It’s been another long period in-between my blog posts, but man, it’s been worth it, ha.  As some of you may know, Amanda and I recently got a new puppy last weekend.  A 9 week old Cavalier King Charles that we named Ruby.  You can see her cute self below.  This dog has kept me busy like no other over the last week and a half.  The first few days it was just non-stop following her around the house.  She was just peeing and pooping everywhere and chewing anything and everything she can get her hands on.  After a while she has calmed down, plays by herself for periods of time, and has managed to go pee and poop on the pads in the area that we have designated.  It was a huge change to our normal lives.  Learning a lot of new things about dogs, our patience, and took ourselves to the extreme of wondering if this was something that we can handle.

Then it got me thinking.  Re-read that last paragraph and change the subject of it from a 9 week old puppy to diabetes.  It was a shock and a complete change up of how I knew and lived life.  I did not choose diabetes however, like we chose the dog, (well, after we saw it, we didn’t really have a choice, I mean, could you have said no to this face).  Ruby - PuppyBut, it really did make me think about learning about diabetes and adapting my life to be able to manage diabetes and control it.  The second night we had Ruby, she would not sleep at all and Amanda and I had to go to work the next day.  I remember telling Amanda, “if I can get through a diabetes diagnosis, I can get through handling a new puppy.”  And so far, so good.  It has been getting better and getting easier, but as soon as you let your guard down for a second, she makes you pay for it, but chewing on wood…. or how diabetes hits ya with a 400+ blood sugar.

I continue to see and think about comparisons between the new dog and my diagnosis of diabetes.  Which leads me to ask you, was there something in your life that happened that you can compare to your diabetes diagnosis?  I think this would be interesting to hear.

Please comment and share because, well, isn’t that what the DOC is all about?