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Category: JDRF

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.

What Is Your Most Creative Fundraiser Idea?

Chris Stocker 1 Comment

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.

Greater West Palm JDRF Events

Chris Stocker 1 Comment

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.

Local Greater Palm Beach County JDRF Events

Chris Stocker

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.

Tonight’s Main Event Fight – Diabetes vs Diabetes

Chris Stocker 1 Comment

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!

Hey JDRF & BD – This is What I Want in an Insulin Pump

Chris Stocker 4 Comments

All this press about all these new technologies and studies and companies joining up with non-profits to do this and to do that, and blah blah blah.  At first when I read the post by Amy from Diabetes Mine about JDRF and BD joining forces, it instantly just reminded me of the post I just had last week about why there will never be a cure! Next, it made me think, well what exactly is it that I want from an insulin pump or what do I want to have in order to manage my diabetes.  This is not like a Jetson’s post.  I am trying to keep this stuff logical and something that can happen in the near future.

Easy to Use

The very first thing that I want is for the device to be very easy to use.  Now that all pumps have built in carb counting and insulin suggestions, it makes life so much easier.  I love that they calculate how much active insulin there is.  Not too many buttons, just 2 or 3 at max to do what I need to do.

Convenient

What I mean by this is that I want to be able to use my iPhone to link with my pump.  My iPhone is my life, literally.  I work from it, I communicate with family, Amanda has one also so we have apps that easily keep us in touch and on the same page with each others calendars etc.  I want to be able to just pull out my phone at the dinner table or at a restaurant and hit a few buttons and then bam, there goes the insulin.  I would like to also just have to use my phone as a meter, not just anyphone, because I know there are phones out there, but the iPhone.

Tubeless

I still use a Medtronic Paradigm, so I have never even used the tubeless / wireless OmniPod yet.  The number reason that I don’t is because I use about 120 some units of insulin a day.  That only holds 200, so I would be changing the pod every day and a half.  I would a pod to be able to carry, let’s say, 600 units of insulin.  I basically only want to change reservoirs and infusion sets, or pods just once a week.  It’s less work I have to do and less garbage and sharps containers I go through.  Charge the same price, it doesn’t matter.

CGM Built-In

I want the CGM and the pod or infusion set to the be the same insertion.  I don’t want to have to wear two separate things.  Very clear on that.

Well, that is what I want in my insulin pump.  I know some of these things exist, but not all in the same pump.  So, when JDRF is giving their millions to these companies, I hope they have spoken with diabetics themselves on what we want, not just what they want to create and think will make life easier.

What do you want?

Why There Will Never Be a Cure

Chris Stocker 4 Comments

This is a conversation that I had today at lunched.  Now, some of you may agree and some of you will disagree, strongly.  The discussion was brought up about the $100 million Obama is going to send to the care of Haiti.  The question was posed to me, “Doesn’t that piss you off that they send $100 million to another country, and that money could be spent on diabetes research?”  Now, I didn’t know how to answer this question at first.  Of course I don’t want to see anybody have to suffer, but I also see the side that my tax money could go to something like research instead.  So, my answer was, “well, there will never be a cure.”

And then the conversation went on with my explaining why, which I will here as well.  And it can be summed it very easily.  You think we are in a recession now?  Find a cure to diabetes and see what kind of recession we hit.  How would scientists that spent their whole life searching for a cure and doing studies about diabetes get a paycheck if there was a cure?  How would they pay their bills.  How would the stores they shop at be affected.  How would the people that work for diabetes companies and products make a living?  It would hit our economy harder than just about anything.

Do I hope for a cure, of course!  Do I still donate funds and do volunteer work, of course.  But realistically, no, I don’t think it is likely.  There will be advancements in the management of it and there will be tools that may make it easier to live with diabetes and maybe even ways to rid yourself of all complications, but never a cure.  Companies can still make money off of advancements, but not off of a cure.

But like I said before, this thought will not stop me from doing what I can to help find one.

Do any of you share this same feeling?

Monday Ramblings, Pink in the NFL, New Basal Rates, No Stress

Chris Stocker

First weekend with the new basal rates and carb to insulin ratio, not bad.  I didn’t see much of a difference, but the after meal highs have come down a little.  There were still highs, but they were about 170-180 insteado f the 230-240 I was having.  It could have also been the food that I ate this weekend because I must admit, it wasn’t the best choices.  Friday night I went to Chile’s.  Saturday night was food court chinese food (my favorite food in the world)  Sunday was a chicken sandwich at the bar watching the Eagles.

This weekend also didn’t really have any stress involved at all.  Saturday Virginia Tech took care of business easily, and so did the Eagles yesterday.  Nothing to stress about sports wise.  My Panthers got beat, but oh well, what are you going to do.  Anyway, onto other things.  I am working on finishing up an interview with my local JDRF person.  She pretty much does everything for the JDRF in this area, so I’ll be posting that later this week.  I have some plans that I’ve been putting together to work with the local office of JDRF and do some more volunteering and working to get more donations.  Hopefully it will all work out, mainly when I actually have some time to.

Seeing all this pink in the NFL again this weekend is pissing me off, because I know that there is not going to be a single thing done for diabetes month.  And there are a few NFL players with diabetes, one of them being a Pro Bowler (Cutler).  Diabetes gets no respect.  Diabetes is the Rodney Dangerfield of comedians, no respect I tell ya.  But all I can do is use my resources that I have to try and get a voice out there and work with you all that have voices as well so maybe one day somebody will hear us.

Well, it’s Monday and Monday’s are always my shortest posts, so I hope you all have an amazing day.

JDRF vs ADA – What are your thoughts?

Chris Stocker 6 Comments

First off, if I have anymore computer problems I am going to flip out and throw this thing out the window.  I was getting some sort of script errors and I don’t know what the heck was going on, so I was pretty much computer-less yesterday.  Anyway on a better note, I have my cup of coffee next to me, making Amanda some chocolate chip pancakes as I speak.  Today is going to be a long day, but what day isn’t anymore.  Long day at the office, long night of football, then the gym, then dinner, then work at home and maybe watch some football if I’m lucky.  I wanted to do this post yesterday, but obviously I couldn’t so here I go.  The JDRF vs ADA, what are your thoughts?  Here are mine (if you care)

I mentioned briefly the other day about how most people have their favorite charity or think that theirs is the best so they want the money for theirs because that cause is more important to them.  In my mind there are two large diabetes non-profits, obviously I am talking about the ADA and JDRF.  Everybody may have their own opinions on these 2 organizations, but overall they are good.  If I were able to only donate to one of them and not both, which I do at this time, this is how I break it down.

I see the ADA and JDRF having two different approaches.  ADA being about advocacy and JDRF being bout research.  So there are two different train of thoughts for me here.  I believe that the ADA is doing a decent job with advocacy in Washington.  Could they be doing better, of course!  So when I donate a dollar to them, I am donating a dollar thinking, “Ok, they aren’t going to help me find a cure, so they are going to help me live a better life with demanding certain rights and insurance priveledges for me”  It is almost as if it is accepted to not find a cure and just deal with the fact that you have diabetes, so let them fight for you and be your voice in Washington.

According to the American Diabetes Association, 24% of funds go to research and 23% goes towards advocacy, however, 21% goes to “fundraising.”  What exactly does that mean?  That $0.21 of my $1.00 goes towards creating a new fundraiser to gain another $1.00 from me?  So I have now donated $2.00 and only $0.48 cents has gone to research and $0.46 to advocacy, but meanwhile $0.42 cents goes to fundraising.  I am not arguing with where the money is being spent because like I said, I still donate to the ADA because I think the things they do are excellent, especially the amount of money they spend on information because the more information the better.  This is just the way my mind thinks of describing the two.

Next up, we have JDRF.  JDRF is my non-profit of choice.  If I had to choose any organization to give money to, it would be them.  The way that I view them is that they are here for one thing and only thing only, to find us a cure and get rid of this nasty thing we all live with.  They obviously dabble in advocacy as well, but their #1 goal is research and a cure, and so is mine.  I want to find something so any chances that my first, second born child will have diabetes will be eliminated.  According to JDRF, approximately 85% of every dollar spent is used towards research.  I’m all about doing it for the kids.

So when I compare the two I see that it only takes me $1.00 spent to get $0.85 worth of research with JDRF.  On the other hand it is going to take me $4.00 spent with ADA to get that same amount of research funded.  This is why I have come to view these two organizations in the way that I do.  I know there are skeptics out there that believe we will not have a cure so we may as well have somebody fighting for us to give us everything we possibly need.  And then there are positive thinkers that just know there will be a cure and do everything in their power to get to that cure, and that’s the boat I am in.  Not to say that one side is better then the other.  In fact, I also think that they should both work together a little closer.

For example, every year for the ADA walk their is a JDRF event the same morning.  Every year at the JDRF walk, there is an ADA event at the same time.  What are your thoughts, do you agree, disagree, am I just crazy?  I will continue to donate to both because I think they are both extremely important.  I know putting up ads and links on your blog is somewhat frowned upon in the dblog world, however if you have noticed that any ad that is on my site, I donate that money to JDRF.  I think this is a great way to easily donate funds to a non-profit of your choice.

Well, I must get going, like I said it is going to be a long day in this life of a diabetic.  So have a great day ya’ll