The Life of a Diabetic » JDRF http://thelifeofadiabetic.com Living Normally With Diabetes Fri, 03 Feb 2012 14:00:41 +0000 en hourly 1 http://wordpress.org/?v=3.2.1 FDA Releases Draft Guidance for Artificial Pancreas http://thelifeofadiabetic.com/fda-releases-draft-guidance-for-artificial-pancreas/ http://thelifeofadiabetic.com/fda-releases-draft-guidance-for-artificial-pancreas/#comments Fri, 02 Dec 2011 15:00:05 +0000 Chris http://thelifeofadiabetic.com/?p=1494
  • E-mail Response from US Senator Nelson (D-FL) A few weeks ago I was inspired by a social...
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    JDRF CEO and President Jeffrey Brewer is quoted as saying:

    “Our initial review of the draft AP guidance indicates that the FDA has been responsive and listened to the recommendations of leading clinicians and researchers in the type 1 diabetes field.  It also appears that the draft guidance lays out a rapid timetable to move from inpatient trials to outpatient trials to prove the AP’s safety and efficacy, and if that turns out to be the case it is good news.”

    You can find this guidance document for the artificial pancreas over at the FDA.

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    ]]>     http://thelifeofadiabetic.com/fda-releases-draft-guidance-for-artificial-pancreas/feed/ 1     Type 1 Diabetes Day – T1D http://thelifeofadiabetic.com/type-1-diabetes-day-t1d/ http://thelifeofadiabetic.com/type-1-diabetes-day-t1d/#comments Tue, 01 Nov 2011 16:59:28 +0000 Chris http://thelifeofadiabetic.com/?p=1440 Yet Another Related Posts Plugin.]]> So today is November 1, 2011. It is a day of many special things. There are some birthday’s to be celebrated today, that is taking up some of my time in reading blogs and writing posts, today is the beginning of Diabetes Awareness month, and it is also the first Type 1 Day (T1D).

    I received an e-mail from JDRF a few weeks ago talking about T1D, but I still was not exactly sure what it was going to be all about and what the campaign was going to be to help spread awareness. All I knew is that it was a day to spread the differences between Type 1 and Type 2. I think that it is great to have specific days dedicated to individual diabetes related “things” throughout the entire month. I like little themes to make up a larger one.

    I received a little foam finger in the mail the other day from JDRF that explained it was to be used to “give diabetes the finger.” Genius, I love it. I love giving diabetes the finger. You can take that for whatever meaning you want, but they encouraged us to take pictures with the foam finger. So you will be seeing one photo a day either on the blog or on Twitter with the foam finger. It is almost like the concept of Flat Stanley where kids are to take pictures with him in different regions of the world and report on where he was and what he did there.

    This T1D campaign may not be the best idea this year, but with it in it’s first year, I think there are always ways to improve going forward. I think the concept and idea is great. JDRF has been hearing from adult type 1′s for a long time that we are left out, they don’t do anything for us, etc. Well here is a perfect campaign and example on how they are gearing something towards adults. I love the fact that national is being receptive to our voices, even if it took a long time. If they could only get my local chapter to be more receptive.

    They created a video to promote T1D, by introducing you to a girl named Meg. I think that the video uses an older, World War 2 style type of campaign. I like retro. Here is the video below:

    To wrap up today’s post of many to come this month, I just want to say that I am honored to share my birthday with a new Type 1 day. I see big things for this day in the future.

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    ]]>     http://thelifeofadiabetic.com/type-1-diabetes-day-t1d/feed/ 2     JDRF Not Giving Me the Time I’m Requesting http://thelifeofadiabetic.com/jdrf-not-giving-me-the-time-im-requesting/ http://thelifeofadiabetic.com/jdrf-not-giving-me-the-time-im-requesting/#comments Tue, 18 Oct 2011 14:00:00 +0000 Chris http://thelifeofadiabetic.com/?p=1380
  • JDRF Promise to Remember Me Campaign Next month I will be visiting and touring the Diabetes...
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    • Related posts brought to you by Yet Another Related Posts Plugin.]]>     JDRF not being responsiveI have been mentioning lately that my local chapters of the ADA and JDRF have not been very responsive to me. I have been sending emails and tweeting to them trying to get their attention. My local JDRF chapter is usually pretty good with responding to me but not much gets done because things have to be approved by the area manager and it seems to stop there every time. It makes me mad because I know that Jeffrey Brewer is receptive to the ideas that I and others share because I have spoken with him directly about it. This is one of the obstacles of taking the online world offline.

    I would really like to work with them for World Diabetes Day but it’s tough to plan things when it is a one way conversation. At times I just think that people don’t see or get the big picture.

    Don’t even get me started on the Diabetes Hero video. I emailed them multiple times about it and no response. They could get a $10,000 donation and no response. I know that a lot of chapters just don’t have the resources because they have 2-3 people trying to do the job on 10-15. I’ve offered to help them with some of their social strategies and outreach but no response. This is what I do for a living and I’m willing to help them for free, it’s almost like a donation. But like I said before, I don’t think that they get it.

    Maybe there needs to be some form of communication from the top down explaining to all the local chapters that there will be some people contacting them and talking about the DOC and they should listen to what they have to say.

    Luckily, there are a few others in this area that are as passionate about this as I am and hopefully we can all work together to get things done.  Mike Hoskins has provided me with some great details and information on ways that him and his area have been able to form a great relationship with their local JDRF chapter.  I would love to hear from everybody on what has worked and has not worked in getting more done with your local chapter.

    Have a great day everybody.

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    ]]>     http://thelifeofadiabetic.com/jdrf-not-giving-me-the-time-im-requesting/feed/ 0     JDRF Promise to Remember Me Campaign http://thelifeofadiabetic.com/jdrf-promise-to-remember-me-campaign/ http://thelifeofadiabetic.com/jdrf-promise-to-remember-me-campaign/#comments Wed, 10 Aug 2011 03:47:17 +0000 Chris http://thelifeofadiabetic.com/?p=1279 Yet Another Related Posts Plugin.]]> Next month I will be visiting and touring the Diabetes Research Institute for the first time.  I have been wanting to do this for so damn long, but haven’t had much of an opportunity to do so until now.  My parents are coming down to visit next month so I thought that it would be a perfect opportunity to finally take the tour and take my parents along with me.  They will enjoy it a lot.  Amanda will also be going to.

    I can’t wait to take pictures and videos and report back on everything that I see in there.  I have heard nothing but awesome things about this tour and I am so excited!  Did I mention before that I am excited?

    On to some other news.  I received an e-mail from the JDRF Promise to Remember campaign today because I had signed up to volunteer to be a campaign coordinator, but unfortunately, well maybe not unfortunately, but somebody else has already taken this position.  They also sent over a list of events that our local Members of Congress will be at during their August recess.  This is awesome, I can’t wait to try and get to some of these events and attempt to get 5-10 minutes worth of of the Congress person’s time.

    If you would like to see this list also and see find out where your Congress reps will be during their recess send me an e-mail or just send me a note in a comment or on the contact me page.

    Way to go JDRF, thumbs up on this one.  Way to help.

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    ]]>     http://thelifeofadiabetic.com/jdrf-promise-to-remember-me-campaign/feed/ 0     How to Take the Online to the Offline http://thelifeofadiabetic.com/how-to-take-the-online-to-the-offline/ http://thelifeofadiabetic.com/how-to-take-the-online-to-the-offline/#comments Wed, 03 Aug 2011 12:30:05 +0000 Chris http://thelifeofadiabetic.com/?p=1237 Yet Another Related Posts Plugin.]]> Last week during DSMA a question was asked about how we can do more to create more offline efforts and offline communications.  My biggest efforts for the offline world are communicating with JDRF and ADA local chapters and trying to get them to communicate together and work together for a larger goal of getting people with diabetes the information that they need.  One piece of that information being access to the DOC.  How do we go about this?  It sounds all fun and dandy to have the JDRF tell every single person they talk to about the DOC, but how do we do it?

     

    Unfortunately, these local chapters have national “rules” that they have to follow and they can’t just add something into their newsletter that is “endorsing” something unless they have approval.  So the first part that I would recommend is to reach out and just simply explain what it is that you are trying to accomplish and see how they react.  If they don’t respond via e-mail or letter or phone call, then try again.  These offices are under-resourced and sometimes it may take a while to get back to something because they just don’t have the manpower to get things done in a timely manner (which is why volunteers are such a huge deal to them).  If after a few attempts, they are not responsive then you have to take it to the next level.

    Call them out…… politely….. on Twitter or Facebook and just ask them to participate themselves a few times in DSMA or just comment on some blog posts and lurk around on Twitter.  Once they see for themselves how amazing this community is, then they will be more responsive to your ideas.  Do not make enemies with them, they are some of the few friends that you have on your side, if you work it the right way.  Be friendly and be willing to work with them.  See if there are events that you can volunteer at and be able to speak with some of the attendees.  This is a way to get your foot in the door and help build a larger relationship.

    Once you have established relationships with both, it is now time to try and get the parties together and start having them communicate a little bit.  I know that this is like asking a Democrat and Republican to agree with each other during an election year, but at the end of the day there is a common goal, to what is best for the majority.  The majority in this situation is the people with diabetes that are directly affected by the decisions that these organizations make.

    The best advice that I can give is to not give up.  Do not give up on the local chapters.  That is where you are going to make the biggest impact.  National change comes from local outrage.  Do not settle for something that doesn’t work.  Strive for the best.  You must be willing compromise however, because not everything is going to turn out exactly the way that you want, but keep at it!

    Another thing that you can do is constantly remind your endo or any other HCP about the DOC and how beneficial it is.  Doctors usually care about their patients enough that they want them to have access to support.  I know there are some legal issues that may arise with this having to do with a doctor referring a patient somewhere and then something going wrong.  However, it doesn’t hurt to try.  I am lucky enough to have an endo that is type 1 diabetic myself, so I am excited for the next time that I see her to try and get her involved.  Unfortunately, due to scheduling conflicts I haven’t seen my doctor in almost 6-7 months and I won’t see her again until November because of how booked the both of us are.  Not good, I know it sucks, but that’s for another blog post.

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    ]]>     http://thelifeofadiabetic.com/how-to-take-the-online-to-the-offline/feed/ 2     Jeffrey Brewer from JDRF at Roche Social Media Summit http://thelifeofadiabetic.com/jeffrey-brewer-from-jdrf-at-roche-social-media-summit/ http://thelifeofadiabetic.com/jeffrey-brewer-from-jdrf-at-roche-social-media-summit/#comments Tue, 05 Jul 2011 16:18:02 +0000 Chris http://thelifeofadiabetic.com/?p=1170
  • Schedule of Roche Social Media Summit Posts Some of you may have been aware that last week...
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    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.

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    ]]>     http://thelifeofadiabetic.com/jeffrey-brewer-from-jdrf-at-roche-social-media-summit/feed/ 3     What Is Your Most Creative Fundraiser Idea? http://thelifeofadiabetic.com/what-is-your-most-creative-fundraiser-idea/ http://thelifeofadiabetic.com/what-is-your-most-creative-fundraiser-idea/#comments Wed, 23 Feb 2011 14:52:52 +0000 Chris http://thelifeofadiabetic.com/?p=1013 Yet Another Related Posts Plugin.]]> It’s about that time of the year again to start preparing for the local JDRF walk.  I was really excited about this years walk because my mom and dad were thinking about flying down to Florida around that time and they were going to do the walk with me, so that would have been fun.  Unfortunately, the scheduling didn’t work out and they have to come down the following weekend.  I need to go online and create my team and start preparing the e-mails and letters and all the other fun things to try and spread the awareness and collect donations.  Sometimes it can be tough to ask for donations because it seems that there is so many other things going on.  Most people are still recovering from spending a lot of money on girl scout cookies.  At the same time there are other non-profits asking for money, so it’s usually tough to get a good amount of donations.

    So, here is the question that I’d like to ask today.  What are some of the best, coolest, and most fun ways that you have ran a fundraiser and collected money to give to your favorite.

    Please spread this around, because I’d love to hear all of your creative ideas!

    Have a good day.

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    ]]>     http://thelifeofadiabetic.com/what-is-your-most-creative-fundraiser-idea/feed/ 1     Greater West Palm JDRF Events http://thelifeofadiabetic.com/greater-west-palm-jdrf-events/ http://thelifeofadiabetic.com/greater-west-palm-jdrf-events/#comments Wed, 03 Nov 2010 12:00:19 +0000 Chris http://thelifeofadiabetic.com/?p=874 Yet Another Related Posts Plugin.]]> Just as a reminder to everybody to help spread the word of two large campaigns going on right now from the Diabetes Research Institute and Diabetes Hands Foundation.  The DRI’s campaign is Be Part of a Cure and the DHF is the Big Blue Test.  Today I would like to let my local readers know about some local events that they may not already know about.

    The Greater West Palm Beach chapter of the JDRF is the one that I work the most with and have the best relationship with so I know most about their activities going on.  I encourage you to visit the JDRF website and reach out to your local chapter and find out what events that they have going on that you can help participate in.  There are a lot of different things going on throughout the month, so I will outline them here for you.

    • November 7, 2010 – Complimentary Family Fun Day at the Palm Beach Zoo. Please RSVP today if you would like to attend.  Find out more details at the JDRF website.
    • November 10, 2010 – Celebrity Bartender night at ZED 451 in Mizner Park in Boca Raton. It will be from 5:30-7:30.  100% of all tips will benefit JDRF.  There will also be raffle prizes drawn.
    • October 28 – November 30 – Donate $1 at Walgreens during this month to help benefit the JDRF.
    • For all a list of all JDRF events, please click here.

    I also encourage you to check out what your other local diabetes organizations are doing as well and get involved as much as possible.  This is November, which means it’s a month all about diabetes.  The month of October receives a lot of attention for Breast Cancer, and I think that diabetes organizations can learn a lot from that and also spread the word as widely as breast cancer information is spread.

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    ]]>     http://thelifeofadiabetic.com/greater-west-palm-jdrf-events/feed/ 1     Local Greater Palm Beach County JDRF Events http://thelifeofadiabetic.com/local-greater-palm-beach-county-jdrf-events/ http://thelifeofadiabetic.com/local-greater-palm-beach-county-jdrf-events/#comments Thu, 26 Aug 2010 12:30:16 +0000 Chris http://thelifeofadiabetic.com/?p=825 Yet Another Related Posts Plugin.]]> I am beginning to get my life back in order after the last couple of months have jsut been so hectic with moving, getting a new job, vacation, buying a new car, blah blah blah.  One of the things that is on my list is working with my local JDRF chapter and begin working on some projects for Type 1 adults because a lot of the things that they put on are for kids and families of children with diabetes, but to reach a larger base I think reaching out to the adults is key.  Also, a quick heads up on another project that I am working on involves all your #bgnow and twitter and Facebook updates.

    So, now here is a monthly update on things that are going on in this area:

    • Monday August 26, 2010 – Montblank Boutique Event
    • September 11, 2010 – Charity Golf Classic at Boca Raton Country Club
    • September 10-12, 2010 – Fresh Market Sidewalk Sale
    • Saturday October 9, 2010 – Adult Scavenger Hunt
    • October 23, 2010 – Boynton Beach Fire Rescue Golf Tournament

    For more event information or to volunteer for any of these events go to their website.

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    ]]>     http://thelifeofadiabetic.com/local-greater-palm-beach-county-jdrf-events/feed/ 0     Tonight’s Main Event Fight – Diabetes vs Diabetes http://thelifeofadiabetic.com/tonights-main-event-fight-diabetes-vs-diabetes/ http://thelifeofadiabetic.com/tonights-main-event-fight-diabetes-vs-diabetes/#comments Wed, 30 Jun 2010 15:56:27 +0000 Chris http://thelifeofadiabetic.com/?p=711 Yet Another Related Posts Plugin.]]> Well, as I spoke about in yesterday’s post about missing the Roche social media summit, it sucked!  Luckily, this was a DOC event so of course our fellow friends were there tweeting everything good going on.  There seems to be a lot that was discussed and hopefully it will make an influence on decision makers minds and that things will get done.

    The tweet that stuck out the most to me was from @saraknic.  I don’t think it was a tweet, and I don’t know how it was said or who it was said to, but Manny put the quote on Twitter, “No other disease fights with itself.”  This struck me big time, because it is something that I have been fighting for, to get everyone on the same page with the same goals.

    Here is a perfect example, my girlfriend Amanda wanted to buy a bracelet with a charm on it, or a colored bracelet, not the rubber ones, but a regular one, and she was going to buy a red one because the is the “color for diabetes.”  Well, red is what the ADA uses, but IDF uses blue.  So which one is it?  Why is it even a question?  When you see the color pink, what is the very first thing you think of?  Exactly.  You automatically think about breast cancer.

    Well, I don’t want to speak too much about things that went on at the event, because I really don’t know and I’ll be waiting to hear from all the people that were there.

    But thank you Sara for bringing up such a great point!

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