Diabetes Scholars – Generosity In Action

The Diabetes Scholars Foundation does amazing work.  They raise money to help get families and young adults to Friends for Life conferences.  As if that isn’t enough, they also raise money to get young adults to college. I’ve written about what they do in the past.  I am a big supporter of them, and appreciate all of the hard work they do.

At each Friends for Life conference, Diabetes Scholars holds some sort of fundraising event. I have attended for the past two years. Each year, at each event, I am blown away by the generosity displayed. The money raised at the Friends for Life events goes directly to bringing families and young adults to future Friends for Life conference.

These conferences change lives. They change lives. Don’t take my word for it.  Have a look at just some of the blog posts in the diabetes online community about this year’s conference.

I’m blown away by the items that were donated, I’m blown away by the number of people that attend, I’m blown away by the money raised. I’m just blown away by all of it.

I’m writing this to give you an idea of what exactly happens at a Diabetes Scholars event. Not enough people know about it, and that is one small area where I can contribute.  Sharing news of good people doing good work is something I am happy to do.

There is a live auction, complete with an auctioneer!

Cool, right?

There is also a silent auction, with donated items lined up, from end to end, on both walls.  The number of items given to help bring people to Friends for Life is amazing.  I grabbed a few pictures, but they don’t do the event justice.

I was able to snag, with the help of Kelly, a cool necklace for my wife, for about $25.  A great deal, and the money goes towards a great cause.  I only wish I had more to spend!

(Big shout out to Jeff Mather for helping me figure out how to work my blog…)

How did they do this year?  Straight from Mary Podjasek, just a few days after the event (“Howl” was the entertainment – dueling pianos):

After paying Howl and the Marriott, it looks like we cleared $36,000. This means we can bring 25 families and 5 young adults next year. This year we brought 22 families and 7 young adults but had almost 100 applications. We would love to one day be able to bring everyone that applies. There is such a huge need. Thanks to everyone who helped to make our event such a success. Let’s try for $75,000 next year!!

Way to go!  As she said above, there is such a huge need.

How can you help?  Spread the word. Donate auction items.  Donate money.  Attend their events. Spread the word some more.  There are lots of ways you can help, even if you are not in a position to help financially.

Not enough people know about this great organization and what they do.  That is something I can help with.  So can you.

Unfortunate Timing: Motor Error

I really do like the Medtronic System so far.  It’s just unfortunate that I haven’t taken the time to write about the positives before experiencing another negative.

For the past couple of years, I have been blessed to serve with Kerri on the faculty of the CWD Friends for Life conference.  To add another layer of blessing, I was able to bring my family down a little early for some fun at the Disney World parks.

Space Rangers

My son and I, professional Space Rangers

I spent most of Monday exploring Magic Kingdom with my family.  It was crazy hot, and we did a crazy amount of walking, and my blood sugars were all over the place.  Probably had everything to do with all of the walking, the heat, the food, and basically not having any real clue how to manage.

I was also thrown off a bit by the Medtronic sensor not tracking real well today.  Overall, I’ve been pleasantly surprised, but today just wasn’t a great day.  Dehydration probably played a role.

Back home, I’ve also been wearing my Dexcom 7+, just because I’m curious how they compare.  I’m not doing any scientific tracking or comparing, just going by general observations.  So far, they’ve been pretty spot on.  When one of them is off, they both are off, leading me to think there’s more to this whole CGM thing (in general) than I probably think.

Preparing to travel, I felt that wearing both devices was just too much work, so I left the other CGM system at home.

Near the end of the night, my family and I were having dinner and enjoying Sunny Eclipse at Cosmic Ray’s Starlight Cafe when my pump alarmed.

I went through the steps of rewinding and reloading my reservoir, running a self-test, and delivering the rest of my bolus (this happened during a meal bolus).

We started the journey back to the hotel (take the train to the tram to the car to the hotel), and about two hours later I was on the phone with Medtronic’s support line.  I was pleased to connect with a live person right away (no answering service or on-call stuff), and the representative was very knowledgeable and helpful.

We went through a bunch of troubleshooting and everything seemed fine, but because I’ve received multiple motor errors on this pump, they are replacing it.  When the rep asked if the pump had been exposed to any strong magnetic fields or anything similar, I had visions of all of the rides I spent the day playing on.

I have no idea how many of those used magnetic magic to work, but I suppose it shouldn’t be discounted as a possibility.  Have any of you had issues with your pumps at theme parks?

I also want to mention that this is still the same pump that got caught in my ceiling fan a while back.

I should receive the replacement pump sometime on Thursday morning (with Wednesday being a holiday, everything is delayed by a day).  Officially I have been instructed to move my insulin therapy to a backup plan until the new pump arrives.

Don’t worry, I am a prepared PWD. Thanks to my pack-rat tendencies, I have more backup plans to pick from than choices of diet sodapop at a fountain drink machine.

Diabetes Scholars – Howl at the Moon!

Howl at the Moon!I’m posting this on behalf of Mary Podjasek, President of the Diabetes Scholars Foundation.  Her mission in life is to help bring more people to Friends for Life (not to mention college scholarships), and that is a mission I support 100%.


Each year, Children with Diabetes hosts a spectacular diabetes conference where thousands of people come together.  It’s an opportunity for individuals, impacted by diabetes, to increase their overall knowledge of diabetes management, receive up-to-date research information and build a lifelong diabetes network.

Unfortunately due to economic situations, some families will never have the ability to attend a conference and participate in this very unique experience.  The Diabetes Scholars Foundation (www.diabetesscholars.org), a 501(c)(3) non-profit, is committed to changing this by providing conference scholarships to families in need.  For families dealing with economic hardship as well as a life threatening illness, the conference has both an immediate and long-term impact on them.  

The Diabetes Scholars Foundation is hosting a Howl At The Moon Fundraiser on Saturday July 7, 2012 (7:00 pm) at the Marriott World Center in Orlando Florida. Please join us for the most unique dueling piano experience in the country.  Come sing, dance and howl the night away as talented musicians perform your favorite songs.  This high energy live show is centered around audience participation and two dueling pianos.  Tickets to the event are $55 and include appetizers, two drinks and a silent/live auction.  Funds raised from this event will benefit some very worthy families, help us carry out our mission and continue our programs. 

We have the following opportunities are available:
$55 – Includes ticket to the show, appetizers and two drinks
$250 – Hip Hop Sponsorship – Includes acknowledgement at event, 2 tickets to show, appetizers & two drinks
$500 – Country Sponsorship – Includes acknowledgement at event, 4 tickets to show, appetizers & two drinks
$1,000 – Jazz Sponsorship – Includes acknowledgement at event, 8 tickets to show, appetizers & two drinks
$2,500 – Pop Sponsorship – Includes acknowledgement at event, 12 tickets to show, appetizers & two drinks
$5,000 – Rock N Roll Sponsorship – Includes acknowledgement at event, 15 tickets to show, appetizers & two drinks

Please consider supporting the Diabetes Scholars Foundation’s Howl at the Moon fundraiser and make an impossible dream possible for some very special families.  Thank you for your consideration


Thank you for all you do Mary!

If this doesn’t quite do the trick for you, you can always make a general donation.  If you have a blog, or webpage,  another way to help is by grabbing the badge off to the right and display it on your site (link it back to http://www.diabetesscholars.com/)

I Support: Diabetes Scholars Foundation

I’m a big fan of the CWD Friends for Life conferences.  I attended my first in 2010, and it changed my life.  Every person who lives with type 1 diabetes (and their family) deserves to attend this conference at least once.  But finding a way to pay for travel, lodging, registration, and incidental expenses is really hard for most people.  The cost involved puts it out of reach for too many.

It should be noted that very generous sponsors heavily subsidize the conference.  The actual cost of renting out a convention center for five days, feeding 3000 people, and getting busloads of kids into Disney is mind-blowing.  The registration fees we are asked to pay are incredibly low when looking at it from that perspective.  Even so, it’s hard for most, and impossible for some.

Enter Diabetes Scholars; a foundation started by a group of parents in 2005 with a goal of empowering through education to give kids and families the tools they need to live well with type 1 diabetes.

I recently spoke with Mary Podjasek, the current president of the foundation, whose husband and daughter both live with type 1 diabetes.  I wanted to better understand the foundation, their goals, and ways that we can help.

Conference Scholarships

Getting families to Friends for Life is how the foundation started.  Scholarships are awarded based on need, with the board reviewing blinded and confidential tax and income information.  Mary said that more priority is given to newly diagnosed families, saying, “If we can catch them early on, it really makes a difference.

Originally focused on the US Friends for Life conference, the foundation is now also working to get people to the regional conferences, Friends for Life Canada, and Friends for Life UK.

This year alone they have received between 70-80 applications for scholarships, and while they feel good about helping those they can, they are heartbroken having to turn people away.

Young Adult Scholarships

Three years ago the foundation started the young adults program, working to help those ranging from about 18-24 who want to go to the conference.  This program is not need based, as it’s important for them to get every young adult they can to the conference.  The foundation wants to make sure that nobody falls through the cracks here — this is a challenging period of life, diabetes or not.

Arming people with education, peer-to-peer support, and a healthy dose of motivation and positive surroundings, can give them a boost as they are transitioning into college, into the real world work environments, away from pediatric care into adult endo offices, and from home life to life on their own.

The scholarships for both family and young adults cover conference registration, lodging at the hotel, and banquet tickets.  The recipients need to find a way to get there and back.

As of this writing (September, 2011), Diabetes Scholars have helped get 200 families and young adults to conferences.  That’s about 33 families each year. Wow.

College Scholarship Program

Four years ago the foundation started the College Scholarship Program, and they are the only foundation in the nation that offers college scholarships that are open to all students with type 1 diabetes.

Each scholarship is for $5000 towards college.

Mary says, “In this one little area of life we wanted diabetes to be an advantage for these kids.

This program is not need based either, but there is a very thorough application (15 pages!).  The foundation looks at their grades, activities, volunteering, leadership, and advocacy, as well as an essay and a couple of letters of recommendation.

All of the applications are blinded, and then reviewed by volunteers all over the country.  A selection committee then chooses finalists. “Every year gets harder and harder”, Mary says, “I could have awarded 100 scholarships if I had the money.

This year alone she had 25 kids who applied that were National Merit Scholars – National Merit Scholars are .5 of the top 1% students in the nation!  And she had 25 applicants that were National Merit Scholars!

In addition to the normal scholarships, they are starting to work with donors and sponsors around unique scholarships.  These scholarships vary in amount and have conditions on them.  Mary says these are much more work, but allow more kids to get more help, so it’s worth it.

Some examples of these unique scholarships:

  • A small non-profit in Michigan offered a scholarship for a Michigan resident that would be going to the University of Michigan.
  • A professional ballet dancer donating specifically for a student going into the arts.
  • SPIbelt donated for an athletic scholarship
  • A resident in Colorado set up a memorial fund for students in Colorado.
  • JDRF funded four different scholarships for very specific areas of interest (political science, medical training, etc).

To date the Diabetes Scholars Foundation has awarded over $350,000 in college scholarships.  That is amazing progress; keeping in mind this program has only been in place for four years.

Vision For The Future?

When I asked Mary about the future of Diabetes Scholars, without hesitation she said she’d like to send every family to a conference and every applicant to college.  “I’m only limited by my funding.

In terms of funding, the past couple years have been really hard for the foundation; with the economy tanking she saw drastic reductions in their donations. One of her major donors had to cut back to nearly one-third of their typical donation.  It’s been really hard on everyone.

She talked about partnering with sponsors to offer internships, which are invaluable for students looking to enter the industry.  Sometimes that experience can make all the difference on a job application.

Mary would also like to expand beyond the CWD conferences.  “There are lots of great things going on that we’d like to send people to,” she says.

How Can You Help?

Many of us are short on financial resources, but there are many different ways to help.  One major way is to spread the word.  Help people understand the great work Diabetes Scholars is doing, and encourage them to spread the word.  The more people who know about the foundation, the more help they will receive.

Find auction items!  Last year the foundation ran a fundraising auction just before the Friends for Life conference, and it was a great success.  But it was hard to find auction items.  Mary said she sent out over 600 e-mail messages and requests for items, and she received donations from a very small number of those.  So keep your eyes peeled for donation items or services that Mary and the foundation might be able to use.

Do you have a blog or a website?  Grab a button and put it/or a link to the foundation on your site.  Help people who can donate to get there.

Run a fundraiser!  In a perfect example of the character Friends for Life builds, the teens and young adults ran a fundraising drive on Facebook last year.  The group to donated their Starbucks money for a week, or donated their babysitting money, or their spare change, or whatever.  That group raised over $3000 to help get a family to the conference.

There are many ways to help Mary and her group, only one of which is actually donating cold hard cash.

The Importance of CWD Events

While in Florida for the 2011 Family Support Weekend I heard a couple of stories that really stuck with me.

For most families, coming to CWD events are very important. How important you ask?

One family was scheduling a c-section delivery of their baby, and actually planned the operation around the Friends For Life conference.

Another family had friends getting married around the same time as the Friends For Life conference. These friends knew how important the FFL event was, and called the family to talk about dates and times for their wedding. They wanted to make sure their wedding plans wouldn’t interfere with Friends for Life for the family.

Weddings and c-section baby deliveries. Those seem like pretty important things to me, and for many families the CWD Events rank right up there with them. I think that’s pretty neat.

Last year was my first year, and it was incredible. I will be back. Every year.

2011 marks an important landmark for the Friends For Life conference. This year there is a lot of energy being put into an adults with type 1 track. I know there are a bunch of bloggers heading down, and many more that wish they could make it.

Don’t let the name of the organization, Children with Diabetes, fool you into believing this conference is just for kids. It’s not just for kids!

It’s a life changing event, and I’m sure the adult crowd will agree.

Faces and Names, Faces and Names

The recent CWD Family Support Weekend I attended had about three-hundred people, plus the volunteer staff.  While much smaller than the giant Friends For Life conferences, 300+some is still a BUNCH of people.

It took me at least three or four introductions, plus a nametag, before I could remember people’s names and faces.  Even with that, I can only remember a fraction of everyone I met there.

It blew me away how Jeff & Laura knew everyone’s names.  I mentioned that to one of the other people down there and they said that not only do they know people’s names, but they will often ask about extended family members and/or pets!  And to take it to another level, they do that at Friends For Life – their biggest conference boasting over three-thousand people.


I don’t know how they do it.

CWD Friends For Life – Mountain Climber!

Sorry folks, I’m not done gushing about CWD Friends For Life.   I left off with Jay Hewitt on three TV screens, and some evening basketball with Gary Scheiner.

I had just as much trouble choosing sessions on Friday as I did the day before.  I’m a big fan of Tom Karlya, also known as “Diabetes Dad“, which made my morning decision that much easier.  He and Kimberly Davis, Director of Federal Affairs at Johnson & Johnson, did two great sessions on “How to Talk to Your Congressperson”.  It was fantastic.  They were fantastic.

Did you know that in Province, RI it is illegal to sell toothpaste and a toothbrush to the same customer on a Sunday?  Or that in North Dakota it is illegal to go to bed wearing shoes?  Or that in Kentucky it is illegal to transport an ice cream cone in your pocket?  In Dayton, OH only men can be hired as hotel bellhops.  I could go on for pages with these.

These are laws.  Someone cared enough about these ridiculous things that they spent a lot of time and energy convincing their local Representative to sponsor the bill and work it through the process.  It takes a lot of time and energy from a lot of different places.

Don’t do nothing! If someone cared enough about those silly laws, you care more about diabetes. Tom drove this point home with such passion.  Don’t do nothing.  I was a fan of Tom before hearing him speak, after seeing his passion in person, I became his number one fan.

I spent part of the afternoon listening to Rick Philbin talk about sports and pumping (titled “Finding the Right Mix”). It was another great session that I got a bunch of useful information from.  Great presentation from Rick, and some awesome questions from the crowd.

I think all of the excitement finally caught up with my buddy Chris Bishop though:

The closing keynote speaker was Will Cross, who has done some amazing things while living with type 1 diabetes.  He has walked (yes WALKED) to the North and South poles, and has also climbed Mount Everest.  He gave a great closing keynote, and stuck around afterward to chat and answer questions.

Collage of Will Cross pictures from CWD FFL 2010

It was another amazing day for me, full of inspiration and incredible memories.

“Diabetes Rising” by Dan Hurley

I first heard of Dan Hurley and his book, “Diabetes Rising“, over at Amy’s site (Diabetes Mine).

She did a two part interview about a year ago (Part 1, Part 2), and there was something about what Dan said that pulled at my emotions.

He says about his approach to the book:

… Even with this best medical advice, I feel that
the ‘just try harder’ approach is not going to work for a lot of people.
If you’re very educated, motivated, and have a good attitude, you can
kind of stumble your way through it. But obviously tons and tons of
people don’t have all those attributes… something else is needed to help

How many times have you felt you needed to “just try harder?”  Or worse yet, been told you “just need to try harder?”  I feel that way almost all the time!  Yet I’m always mentally exhausted from it all.  Try harder?

After Amy’s interviews the book fell off my radar.  The book wasn’t available for order at that time, and my attention span just didn’t last.

While down in Florida for the Roche Summit and CWD Friends For Life Conference, Lili and her husband told me they bought a copy of his book at his booth.  I said “wait – you mean he’s HERE?” and made a dash for the booth.  It was weird for me to say “Hi Dan, Uh… I’m a big fan, but haven’t actually read your book yet…”

I told him that I had seen the interviews on Amy’s site and they had really piqued my interest.  He was extremely pleasant.  We chatted for a minute, he signed my book, then I grabbed a picture with him.

"Dan Hurley - Diabetes Rising"

I wasn’t sure I’d like the book.  I figured with a name like “Diabetes Rising” it would be all about type 2 diabetes and the panic the world is in.  That wasn’t the case at all.  There was a lot about both type 1 and type 2 diabetes.  Dan is a very scholarly looking fellow, complete with a bow-tie and all, which set me up to expect a very dry and technical book.  When I got to the title of the first chapter, “Pissing Evil”, I smirked a bit and had a feeling that I would enjoy Dan’s style.

There were a couple of paragraphs that just shouted to my soul, and I
asked Dan for permission to quote them here.

The Computer Cure – The Quest for an Artificial Pancreas
In Chapter 10, Dan covers some information about his experiences being connected to an artificial pancreas for a day.  He’s talking with Marc Breton, PhD, the systems engineer who was designing the software to control the artificial pancreas.  Dan asked Marc “why, from his perspective as a programmer, is controlling blood sugar so maddeningly complicated even though it involves just two variables, insulin and sugar level?”  Marc came up with an almost perfect metaphor to explain it (italics mine):

The glucose you measure with a continuous monitor was accurate fifteen minutes ago.  The insulin you take does not start acting for twenty minutes, has a peak of action around forty-five minutes, and it continues to act for up to three hours.  So you are acting on out-of-date data, and you’re using a mode of action that will only kick in much later on.  It’s like you’re driving a car down a winding road — but you aren’t able to see that the road turned until you are fifteen yards past it, and turning the wheel will have no effect for two hundred yards more. If you’re driving a car like that, you’d better have a good map.

Two sections later in Chapter 10, Dan is now hooked up to a closed-loop trial system:

At 11:07 P.M., watching Seinfeld, I had a sudden urge to go running down the hall, skipping and yelling, in celebration of not having to worry about my insulin and sugar levels — of being, for one night only, magically freed of my diabetes.  And then I felt myself close to tears, thinking what a pain in the ass, and how phenomenally distracting, it is to be constantly worrying about my goddamn sugars, instead of focusing on my work and my family and my friends and my life.

I found myself near tears just from reading that – but am admittedly a softy when it comes to the emotional prices we all pay living with diabetes.  There was plenty of other great writing before and after chapter 10, of course, but these two quotes really pulled me.

I really enjoyed reading Dan’s book.  His writing style entertained me, and spoke to me beyond the words on the page.  There’s a certain wisdom that comes from living a long time with something like diabetes, and I got a lot of that from everything Dan shared.

CWD Friends For Life – Epic Sizer!

I walked into the Richard Rubin Keynote (opening session) with an overflowing breakfast plate and my shoulder bag full of diet sodapop.  After only a step or two into the room I was stopped in my tracks by the sheer size of this thing.  I had no idea.  No. Idea.

Picture of the opening breakfast banquet roomI could not even see the people on the other side of the room.  They were lost over the horizon.  There were THREE giant TV screens to broadcast the podium.  THREE SCREENS!

I was very full of emotion being surrounded by so many people all deeply entrenched in diabetes.  Everyone there was either a person with type 1 diabetes, a parent of a child with type 1 diabetes, family member of someone with type 1 diabetes, or a caregiver for someone with type 1 diabetes.  Type 1 diabetes, type 1 diabetes, type 1 diabetes.  Everywhere.  I have never experienced so much type 1 diabetes in one place.  I was overwhelmed by it all.  The love and support just swallowed me up, and the program hadn’t even started yet.

Picture of Scott & JayJay Hewitt, an Ironman Triathlete who lives with type 1 diabetes, delivered an incredible opening speech.   The Ironman Triathlons are a 2.4 mile swim, 112 mile bike ride, THEN a 26.2 mile run.  One right after the other.  Not the next week, not the next day, but all together in a single day.  It is an amazing accomplishment to train for something like that, much less compete on a professional level.  And to do so with type 1 diabetes?  I find that incredibly inspiring.  I really enjoyed Jay’s ability to tie in the struggles we face living with diabetes into the challenges of such a grueling endurance race.  I was very moved by his speech, and was thrilled to have the opportunity to shake his hand, thank him, and get a picture with him.  Thank you Jay!

I had a lot of trouble deciding which sessions to attend for the rest of the afternoon.  I wanted to go to ALL of them!  For the most part, I made good decisions about what to attend, but I also missed some great discussions.  There was just no way to attend six sessions all at the same time.  If I could have figured out a way to do it, I would have.

One of the things I enjoyed most was constantly bumping into, and visiting with, people from the DOC.

Collage of DOC peeps at CWD 2010

Picture of the Edelman's, Lee Ann, & Heidi

And to top the evening off, I even got to play some basketball with Gary Scheiner.

Action shot playing basketball at FFL 2010

Thanks to Kerri for this action shot!