Rekindling Hope

Screenshot of article at Insulin Nation

Insulin Nation features a story on the bionic pancreas

Hope is a strange thing for someone who has lived with diabetes for as long as I have.

It’s there.

Deep inside me somewhere.

But it’s dormant; smothered to sleep by decades of failed promises and premature excitement (usually involving cured mice).

Ed Damiano showed me something pretty amazing at the CWD Focus on Technology conference recently, and I felt a glimmer. It was like he had a bellows and was delicately nursing to life the embers of hope in me.

The Bionic Pancreas – the tagline on the website is “using mathematics to treat diabetes …five minutes at a time.

This bionic pancreas is not a cure. It is exactly what it sounds like. A bionic pancreas. Which is kind of what we have now, but with a couple of weak links. We are one weak link, and our crippled glucagon response is the other (that last one is complicated, and beyond the scope of this post).

Ed and his team have created a system that uses existing technology (a Dexcom G4, an iPhone, and two Tandem tSlim pumps) to make a new decision about insulin and glucose dosing every five minutes. I won’t get into the studies and details here, it’s all on their website. But I will say that they are on-track (with an aggressive trial schedule) for commercialization in 2017.

The online publication, Insulin Nation, pictured above, has a lot of information in their story, and I encourage you to check it out. Ed has also been featured on a bunch of different websites and presents regularly. Just plug his name into Google and you’ll find more information than you can handle.

What really stoked the hope fire in me was the description of getting back to a normal life. To sit down at a meal and not think about the grams of carbohydrates, but to only need to tell the system if this meal is larger or smaller than average for you.

Can you even imagine?

And it’s almost here.

2017 is an important marker for Ed Damiano. That is the year that his son, who lives with type 1 diabetes, goes off to college.

If he’s willing to strap this thing onto his own child, I’m willing to give it a try too.

I can’t think of better way to close this post than to quote a friend of mine, Sean, who sat next to me as we listened to Ed.

But most of all I learned about hope.  More specifically, about watching in wonder as dormant and forgotten hope is revived before your very eyes into something stronger and more vital than it ever was before you lost it.

and

Today, though, I feel like I have seen the future, and a future which is not at all far away.  I have seen it in tremendous detail, for that is how it was shown to me.  I have seen pictures, and data, and technology, and journal articles, and a device, and a patent, and–perhaps most importantly–the unbridled passion of a man who I KNOW will make it happen.  I know this not because his passion is contagious (it is), not because his results are stunning (they are), but because he has already made it happen.

 

 

“An Orange Peanut?! For Me?!”

Lots of news to spread today! Buckle up for some bullet points.

FocusOnTechnologyLogo400Are you near the Washington, D.C. area (Crystal City, VA, specifically)? Come to the CWD Focus on Technology regional conference and expo happening next weekend, February 1-3, 2013. Sebastien Sasseville is the keynote speaker, and this dude is a total badass. He jogged across the freaking Sahara desert, m’kay?  I’ll be doing a session with my favorite short d-blogger on diabetes devices in the real world. It also sounds like a handful of DOC locals will be getting together for dinner on Saturday night. I’d love for you to join us!

logoRonen Keinan asked for help recruiting early adopters to a new tool his team is working on called Medivizor. It’s a service that offers personalized information updates around serious or chronic medical conditions to people and their caregivers. They believe they have solved the ‘needle in the haystack’ challenge and are able to give you updates that are relevant, understandable, and actionable. If you’d like to help them out, head over to medivizor.com and sign up.

pic small cover uploadI recently finished “Islands and Insulin” by Erin Spineto. Erin lives with type 1 diabetes and was drawn to challenge herself by sailing a 22-foot sailboat down the Florida keys and writing a book about the journey, from conception to completion. It’s an enjoyable mix of love, learning, diabetes, and adventure. The book will hit the shelves soon, and if you’re looking for a fun book with plenty of diabetes mixed in, this might be a good one for you.

photoI’m loving the new look of the Insulin Nation website! I’ve always enjoyed their content and the new site design makes it easier to get to.  If you haven’t had a look, please go check it out. “Iron Andy” and his crew are doing great work there.

diatribe_logoAre you a subscriber to diaTribe? If not, you should be. We spoke to Adam Brown, co-managing editor,  on DSMA Live last night. diaTribe is a top-notch publication that provides incredible information that’s super easy to understand. And it’s free!

indexI recently connected with Stanley Rak, from Food Facts, a website that says it is the largest, most comprehensive internet source for nutrition facts. Anyone out there used this site yet? How does it compare to Calorie King (what seems like the gold standard for many)? At first glance, it looks pretty impressive, especially how it lists common allergens and calls out controversial ingredients. Thoughts?

white-and-black-iphones-heroDo you know about Glooko? It’s a cable for your iPhone that connects to a bunch of meters and downloads your readings. They’ve just released their Logbook Charts site which allows you to get a better look at your information. Along with that, they are introducing their brand new community blog which will focus on real people with diabetes, better ways to use Glooko, as well as recipes and wellness information (site is no longer online).

I have been totally hooked on the “Bad Lip Reading” videos.  ”An orange peanut?! For me?!”

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.

Iris Checked my Irises – 2012 FFL Conference

Among other things, Kerri and I were responsible for being “room captains” of the Adults with Type 1 room (sponsored by Insulet (thank you!)) at this year’s Friends for Life conference in Orlando, FL last week.

Being a room captain means introducing speakers, making sure there is water and glucose tabs available, answering questions, and basically making sure the presenters have everything they need before presenting.

I tried hard to fulfill my duties most of the day but was promptly kicked out of the “Pregnancy and Momhood with Type 1” session.  Something about upsetting the vibe or some such nonsense.

Eyeball PictureEarlier in the day, Jeff Hitchcock explained that Dr. Ben Szirth and his team from the Institute of Ophthalmology and Visual Science at the New Jersey Medical School were doing retinal screenings again, and had brand new equipment that could get extremely detailed images of the eye without the need for dilation (a normal part of a typical diabetes eye exam that turns the exam into a half-day ordeal).

I was very interested, but they were super busy. None of the time slots left in their appointment book worked with my conference schedule. If I had any chance of getting in, it would be during this little pocket of “down time” in my day, and only if they had time for a walk-in.  I was blessed and they were able to squeeze me in.

There were a number of stations in the room, each serving a different purpose.  My first stop was with an ophthalmology student named Iris.  No, I’m not kidding.  Iris was checking my irises!  I thought that alone deserved a blog post!  If she keeps up on her studies, she’s going to be a hit in this field.

She measured my pupils, checked my depth perception (which was a surprisingly difficult test), then checked my vision using the standard “read the smallest line you can see clearly” chart.

Up next was some checks of my vitals (blood pressure, oxygen levels) and another vision test – but this time with a fancy machine.  All I had to do was look at a picture of a barn in a field on a screen inside the machine, for a few seconds on each eye, and that was it!

The next station took some seriously fancy scans of the thickness of the back surface of my eyes.  It took only seconds on each eye for the computer to grab twenty-some images and do a bunch of fancy measurements and such.  If you haven’t noticed already, I have no idea what this machine really looked for, but it was cool nonetheless.  Kelly and Brianna have some great pictures of what the docs see on the computer screen – head over to her blog to have a better look.

Brianna's Eye

This is Brianna’s eye – check out their post for more!

The last station was with Dr. Ben himself.  The expert of experts, leading this incredible group of medical students through some advanced diabetes eye health, real-world experience.  At this station, Dr. Ben takes a few super-high-res photographs of the back surface of the eye.  This allows a very in-depth analysis of the retina and allows him to check for any signs of diabetes-related issues.

He gave me a glowing report, with not even a trace of diabetes-related issues on the retina.  In fact, one of the things he said will stick with me for the year…

“I can see from your eyes that you exercise a lot!”

Wow!  I have never felt more proud of myself for all of the hard work I put in with my diabetes management, at the gym, and on the bike.  Ok, the gym part feels a lot more like fun (basketball!), but still.

The only issue that Dr. Ben saw was some signs of cataract in one eye. He said that is pretty normal for most people, but appear slightly faster for those living with diabetes.  Sunglasses are the best form of protection, and can slow the progress quite a bit.  He said it might be another twenty years before anything needs to be done about it, and if I’m good about wearing my sunglasses I might stretch that out another ten years.

The images I saw of my eyes and their vascular system were clean, thick, and strong. And I’ve never received a pat on the back that felt better than the words from Dr. Ben…

“I can see from your eyes that you exercise a lot!”

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.

I’m Proud of Bennet!

Last year, at my first Friends for Life (FFL) conference, I bumped into Gary Scheiner in the exhibit hall. He told me that they play basketball in the activity center in the evenings. I didn’t have any of my basketball gear (contact lenses, ankle braces, etc) but wanted to give it a try. It was so much fun.

This year I made sure to pack some basketball clothes.

George and Cherise covered my co-hosting duties for DSMA Live on Thursday night, and I got to enjoy some basketball. It was a blast!

We were able to round up a handful of grown-ups and a bunch of athletic younger folks, and we ran full-court ball for about an hour and a half.

Rick Philbin is a basketball stud, and the guy is in amazing shape. He pretty much does whatever he wants to on the court, and there’s not much any of us can do about it. Thank goodness he enjoys getting everyone involved in the game.

Andy Bell also played for a while, and he was a defensive powerhouse! He had at least five blocks. And not just fingertip-deflection blocks. I’m talking full on “smack-the-ball-across-the-gym” blocks. He didn’t bring basketball clothes, so he was hooping it up in blue jeans. I loved it!

Adam & Ben from Vlose Concerns, you guys are hoppers!

You know who made the biggest impression on me? Bennet. Yep, YDMV Bennet. I’m so proud of that guy. He is working hard on his health, and it was evident on the basketball court. Before we started he told me that he hadn’t touched a basketball in a lot of years. I can’t remember how many years, but let’s just say it was more years than my conscious memory goes back.

He worked so hard out there, and totally held his own on the court.

Way to go Bennet! Work on that jump-shot this year – I’m counting on you being on my team again!

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I’m heading to Vegas for the week for the AADE Conference. I’m looking forward to learning a lot, seeing old friends, and making new ones.

2011 Friends for Life – Where to Start?

Is it possible for an annual event to change your life for the better each and every year?

Is it possible for that event to be better than the year before, without taking away any magic from the previous event?

Absolutely.

I don’t know how they do it, but Jeff and Laura have the formula for magic in a bottle, and they sprinkle it over every conference they touch.

Contrasting Feelings

It was so amazing to see so many people living with type 1 diabetes together in one place.  It was also heartbreaking to see so many people wrestling with type 1 diabetes.

It was heartwarming to see so many people come together to support loved ones living with type 1 diabetes.  But it was devastating to see the impact of a diagnosis on a family.  The ripple hits so many around us.

It was overwhelming to see all of that money in the exhibit hall.  It was shocking to think about that money coming out of our pockets.

I was completely giddy being surrounded by so many of my friends from the DOC at the conference; happy, happy, fun, fun, joy, joy.  But a couple of scary low blood sugars bring the seriousness of this thing we live with right up close.

It was encouraging to hear Joe Soloweijczyk celebrate 50 years of type 1 diabetes.  It was recognition and familiarity that hit me when he wondered how he would find the energy to keep going.

After no more than a day, I was more exhausted than ever before.  At the same time, I was immediately full of endless energy and a drive to take it all in.  Sir Ken Robinson would say I found The Element.

Knowing When To Listen

More often than not, I found myself surrounded by brilliantly smart people. 

Thinking about the many different ways people can be smart, it doesn’t take long to appreciate the diversity that is possible.  There are so many different areas of expertise in life with diabetes.

Friends for Life brings them all together.  The best of the best.  Scary smart.

Knowing when to simply be quiet and listen is a skill that I am working hard on.  I got lots of good practice at Friends for Life, 2011.

Appreciating Opportunities

The CWD organization works very, very hard to make Friends for Life all about education and friendship.  It is not about fundraising, it is not about soliciting loyalty, it is not about anything except diabetes education and friendship.  Think about that for a minute.  I hope you’ll appreciate how unique that is.

They give with all they have, and ask for nothing in return except for us to share our experiences.   The cost of the conference is heavily subsidized by generous sponsors.  As consumers we would do well to recognize the companies that help make Friends for Life possible.

I appreciate the opportunity to learn so much from so many.

I appreciate the opportunity to create new relationships that change my life.

I appreciate the opportunity to cry without needing a reason.

I appreciate the opportunity to have the very core of my diabetes person embraced, recognized, empowered, and encouraged.

I appreciate the opportunity to play basketball with StefanRick, Gary, Bennet, Andy, Adam, Ben, and a bunch of young FFL hoopsters!  As hard as it is to break away from some of the social activities, playing ball with these guys is one of my favorite things.

Diabetes Scholars

Every person touched by type 1 diabetes deserves to experience Friends for Life.  The cost of travel and lodging put this conference out of reach for far too many people and families.  Diabetes Scholars Foundation is a 501 (c)(3) organization working hard to get more families to Friends for Life.  If you are in a position to help, please do so.  This conference will change the lives of anyone who attends.  If you have a website or blog somewhere, grab the button and link from my sidebar and consider putting up on your internet space.

More to Come

The idea of trying to capture all of what my 2011 Friends for Life experience was like is completely overwhelming.  Even two weeks later I’m still trying to wrap my brain around how incredible it was.  I’m going to keep writing little blurbs as I process, but I’m not going to put any time-frame on it.  My brain doesn’t work that way.  Stay tuned!

In the meantime, check out the official report, photos, and other write-ups!

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[Disclosure – as a faculty member this year, CWD paid for my travel and lodging.  I was not asked to write or not write about my experiences, and there is no editorial control nor input outside of my heart and brain.]

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.

Type 1 Teens – by Korey K. Hood, PhD

Book cover image for Type 1 Teens by Korey HoodIf you are a teen who lives with diabetes, I recommend this book.

If you are a parent of a teen who lives with diabetes, I recommend this book – but DON’T FORCE IT ON YOUR TEEN! 🙂

I met Korey when we did a session together for the Children With Diabetes (CWD) 2011 Family Support Weekend a few months ago.

I was able to grab his book and do a little homework before heading to the conference, and I’m very glad I did.  Meeting Korey, on it’s own, is enough to make you like, appreciate, and respect the guy.  But having read most of his book, and holding in high value the talent he displayed in writing it, made my short time with him even more enjoyable.

There is a fine line when writing a book addressed to teenagers.  You have to talk their language, but not in a condescending or offensive way.  These kids are smart, and they will pick up on the smallest amount of disrespect, and then abandon the whole conversation in the blink of an eye.

But you also need to communicate what they don’t know, and what you, as an adult who knows about diabetes (and as in Korey’s case, an adult who lives with diabetes) know.  And you need to do that in a way that gets across to them, without shutting them down.

Korey walked that line perfectly in his book.  He was graceful, respectful, authoritative (when necessary), and understanding.  This is not a clinical book about being a teen with diabetes.  This is a realistic book about being a teen with diabetes.

Even as an “old man”, I really enjoyed it, and learned from it.  I hope that it is just the beginning of Korey’s writing career, and that we see many more books from him on many more aspects of living with diabetes.  He has a lot to offer.

Korey works at the Cincinnati Children’s Hospital, working exclusively in type 1 diabetes.  He conducts interventions to improve diabetes management, quality of life, and blood sugar control for adolescents with type 1 diabetes.

In short, he’s helping kids when they need it most, and providing something I bet many of us wish we had as we grew up with diabetes.

Thank you Korey!