IDF World Congress in Melbourne comes to an end

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The IDF World Congress in Melbourne closes today, and it’s been a delightful five days. 

For me, it began with my address to the “Young Leaders” Friday night – 137 diabetes advocates between the ages of 18 and 30 from 70 countries who are working to increase diabetes awareness, education and healthy living in their country. If you spend an hour in a room with them, you will marvel at how passionate, committed, mature and hopeful they are.

I addressed the Young Leaders as Novo Nordisk’s Keynote speaker and then facilitated a workshop to help them develop their personal stories of living with diabetes and include some of the major findings from Novo’s DAWN2 (Diabetes Attitude, Wishes and Needs) study. Predominantly to live well patients need: 1) Family involvement and support; 2) Education and 3) Fair Treatment.

Being quite honest, in some ways it’s a double-edged sword to come to a diabetes conference. To sit for five days and hear lecture after lecture about the biology, medicine, devices and psychology of diabetes  On the one hand I am lifted by the work being done in the field – and the passionate, caring, genuine experts who are wedded to the cause. I revel in learning what is new, about the advances we’ve made, those around the corner and five and ten years off, and I am among my own. The easy new friendships and conversations that spring up are a rare treasure.

Yet, I am also reminded non-stop of my condition: that no matter how hard I work managing my type 1 diabetes there are no guarantees for a continued healthy future. By its very nature, while we try to control the beast, blood sugar is unpredictable and intense management, while our best card to play, is to some degree a wild card. It was upsetting as well the first few days to learn at this conference that two of my fellow diabetes advocates, even with all their hard work managing their diabetes, each have a new complication. Yet, I have also heard some positive news, that longevity with type 1 diabetes does not necessarily mean you will get complications. In the end, all we can do is our best each  day. 

So what have I learned? That the IDF have two inspiring stewards, President, Sir Michael Hirst, whose own daughter has type 1 diabetes, and new CEO Petra Wilson. That both are committed to the cause and come with many skills, talents and new ideas. 

With Sir Michael’s background in Parliament, he aims to help reform governmental and environmental policy to make healthy choices easier. Wilson’s tech and healthcare background at Cisco will serve her aim to improve the reach and efficiency of healthcare through online technology.

I have also learned that:

• Too many healthcare providers (HCP) still talk in terms of patient “adherence” and “compliance.” 

• The behavioral sessions were too small for the overflowing crowds that couldn’t fit in the room. 

• HCPs think they involve their patients in their treatment while patients largely do not. 

• Diabetes only continues to increase around the world and insulin is still in short supply in third world countries. 

• We have more evidence showing the value of a closed loop system for better blood sugar control and less hypos and so we continue to inch toward having a mechanical “cure,” and that the tools we use today, while a giant leap forward from decades ago, are still enormously primitive, leaving us again only to do our best. 

And so I have come to an awakening. That those of us who have type 1 diabetes, particularly those of us in positions of advocacy and influence, as educators and role models, are, while trying to show the world how we can do anything with type 1 diabetes, unintentionally hiding how much work it takes and how unpredictable it is. 

So I hope to never hide again the fact that my blood sugar is going low before giving a presentation, or that I didn’t properly dose for a meal I had no knowledge had hidden sugar in it, because I have to be a “perfect diabetic.” 

Because when I do hide those things, I am denying the very nature of type 1 diabetes, and inadvertently, denying my fellow patients and the general public, what I want them to know. That the often unreinable blood sugars of type 1 diabetes are often not our fault, and that both exist – I can thank my diabetes for much it has given me and its management takes a great deal of discipline, hope, humor and dedicated effort.

137 “Young Leaders” at IDF’s World Congress in Melbourne

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I’m in Melbourne Australia where Friday night I spoke to 137 young people from 70 countries, largely with type 1 diabetes. They are known as the“Young Leaders” and are part of a program sponsored by the International Diabetes Federation (IDF). 

Tomorrow IDF’s World Congress brings together 10,000 global health care professionals, members of industry, pharma, patients and media who have gathered to hear about the latest advances in diabetes, treatment  and education as diabetes only continues to grow at rapid rates around the globe.

Yet while diabetes seems to run rampant with no end in sight, Friday was an enormously special evening. I was the kick-off speaker for Novo Nordisk, one of the largest pharmaceutical companies, if not the largest, headquartered in Denmark. And it is also an exceptional company. Their mission and values include helping patients manage the psycho social aspect of diabetes.  

From 2011-2013 Novo conducted an impressive study on what patients need emotionally to live healthy lives with diabetes. Top findings were: 1) family involvement and support, 2) Education and 3) Fair treatment. The study, called DAWN2 (Diabetes Attitude, Wishes and Needs) follows an original DAWN study conducted by the company in 2001. 

Throughout the World Congress this week DAWN2 study results will be shared with attendees. But Friday night they were shared exclusively with the Young Leaders.

Following, I had the distinct pleasure to co-facilitate a workshop to help the Young Leaders develop their personal “stories,” and with the major findings from the study, create powerful, persuasive messages for their advocacy.   

As I told the group, our stories of living with diabetes are one of our most powerful tools to elicit change. They are the string that goes out and ties us together, inspires hope and possibility, and moves mountains – which is frankly what we need today and in the coming years to stop this epidemic. 

I am especially gratified to know that these young leaders will be moving mountains when they get back to their home country. And, frankly, that inspires me. 

Addressing Sanofi’s global device developers

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Yesterday I had the pleasure of speaking to 80 people involved in, and committed to, the development of medical devices. I was addressing Sanofi’s global device developers offering the “Patient Perspective.” How I interact with devices – how they help me manage my diabetes, and my life, where they let me down and what else I’d like to see.

For me, it’s always a joy to share what living with diabetes is really like, and help others understand the good, the bad and the ugly. I calculated that living with type 1 diabetes 41 years, I have taken 76,115 shots and 60,972 finger pricks. I have spent over a billion seconds of my life calculating how many carbs are in what I eat, when I will take my walk, whether I need to refill my scripts, see my doctor, take a correction shot and on and on.

The heads nodding in the audience told me they either “got it” or their eyes were being opened. I also shared my views about what devices I use – glucose meter, Solostar insulin pen, Timesulin insulin pen cap, ACCU-CHEK Multiclix lancing device, Dexcom G4 CGM and a low-tech little key chain that carries 4 glucose tablets.

The t:slim insulin pump was on my “cool” list, looking as it does like an iPhone. And the Lantus Solostar and Apidra insulin pens on my “oops” list. So similar in design and color, I know too many patients who have confused them and landed in the hospital.

In the end, my advice for Sanofi’s team to better know how to design products we want to use is to “Be a patient.” La vida loca, “live the (crazy) life” of someone with diabetes. Check your own blood sugar 8-10 times a day, log your blood sugars and count carbs in your meals.

And spend time talking to people with diabetes. How else would you know why I love my CGM (affectionately known as “Pinkie”) yet don’t use an insulin pump?

My parting image was this little girl up there – me at three. She had no idea diabetes was coming down the pike in 15 years; that that diagnosis would change her life forever.

Yet, she and I are hopeful for the devices that will still come. And the one I’m truly waiting for is the one that lets the one I use most often, my brain, retire.

It will be the device that when I’m walking, eating, watching a movie, standing on line at airport security or making love doesn’t have me wondering, “What’s my blood sugar now and what do I have to do about it?” Because it has already taken care of it for me.

Learn more diabetes in one day at TCOYD


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The latest TCOYD (Taking Control of Your Diabetes) online newsletterfeatures my new diabetes survival guide – “Diabetes Do’s & How-To’s” – on its back cover. My thanks to all my generous friends at TCOYD and Dr. Steven Edelman, its founder. Read the whole newsletter and start learning.

I interviewed Dr. Edelman as a diabetes change leader on The Huffington Post. He created a true breakthrough – the delivery of diabetes education directly to patients via conferences. Don’t hoard conferences just for doctors was his enlightened thinking. For while Edelman is a doctor he has also been living with type 1 diabetes since the age of fifteen.

I also found my whole thinking about my power to live well with diabetes change when I attended my first TCOYD event. That was back in 2005 in San Diego. I was sitting in CDE/Psychologist, Bill Polonsky’s session. He said, “Diabetes doesn’t cause blindness, heart attack, amputation. Poorly controlled diabetes does.” Today he often says, well controlled diabetes is the cause of nothing. 

It made me realize my actions largely control my illness and I have power over my actions. Take good actions and you will benefit. I began using my power: eating healthier, eating less and walking more. The results have paid off and I see it each year when I get my blood work done. 

I highly recommend getting to TCOYD’s one day event, even if you have to travel. You will learn so much and it costs a mere $10 or $20 depending on when you register. 

Events are presented around the country, so see if there’s one coming up near you or take a trip, it’s worth it. This fall TCOYD will be in Worcester, MA, Omaha, NE, Albuquerque, NM and San Diego, CA. Here’s the schedule.

For now, sending my best to all my friends at TCOYD, the thousands of patients who have benefitted from a TCOYD event, and those who yet will.

Weekend for (Diabetes) Women, May 3-5, Raleigh, North Carolina

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Join me and other diabetes advocates and luminaries for a great weekend of learning and bonding provided by Diabetes Sisters.

‘Weekend for Women’ is two and a half days that offers a unique opportunity to gather with an intimate group of about 100-150 of us women, type 1 and type 2, to share experiences, learn from experts and each other, have fun, take a short walk through town to raise diabetes awareness, and come away – renewed, invigorated, smarter, wiser and more able to manage our diabetes. You can’t lose.

Friday night kicks off with a social gathering, Saturday is a day of health, wellness and transformation with the most influential voices in diabetes leading incredible talks, break out sessions, and giving practical tips and tools. Sunday is packed with more information and opportunities to cement the new friendships you’ll be making. Here’s the full schedule.

Also, you can bring your partner or spouse. They’ll be a whole track of seminars for them to have their needs addressed, bond, and better understand how to support you.

I’ll be speaking along with Kerri Sparling Morone and Ginger Vieira, fellow PWDs and top diabetes educators, dietitians, nurses and PhDs.

Early registration is open now til February 15th for just $125. General registration $150.

TCOYD comes to Tucson February 23rd, pre-register now



TCOYD, which stands for Taking Control of Your Diabetes, has been a fixture in my life for the past 10 years. It’s an incredible one day health fair that’s offered around the country, and it’s coming to Tucson February 23.

For only $15 (or $10 apiece for 2 people or more) if you register by noonFebruary 20th, you get a full day of learning from diabetes experts, endocrinologists, pharmacists and personal trainers who will ignite your motivation, answer your questions, share advice and recommendations, offer hope and can even change your life, or that of someone you love, who’s living with diabetes! Day of the event registration costs $20 per person.

I attended my first TCOYD conference eight years ago and it was there in a workshop being led by psychologist/CDE Bill Polosnky that I heard words that changed my life. He said, “Diabetes doesn’t cause diabetes complications like heart disease, blindness, kidney disease and amputation. Poorly controlled diabetes does.” When I heard that I knew if I really took care of my diabetes, I could improve my health dramatically.

Now here’s your opportunity to learn, do better, take charge of your health, help prevent or delay complications, have fun – and meet other people with diabetes in the process. 

TCOYD’s founder, Dr. Steven Edelman, has been living with type 1 diabetes since he was 15 and decided learning about diabetes shouldn’t just be for medical professionals, but directly reach patients. Now that’s a doctor who “gets it.” So since 1995 TCOYD has been educating patients around the country. Dr. Edelman is 57 today and living well with his diabetes, as am I.

To register, or to get more information, call 800.99.TCOYD (800.998.2693) or visit If you can’t make it to Tucson, the next event will be in Santa Clara, California on March 23rd. Trust me, you won’t be sorry. This can be the first day of the rest of your better life with diabetes.

American Diabetes Association conference highlights


I want to tip my hat tonight to my colleague Amy Tenderich over at for her reporting on the American Diabetes Association’s (ADA) annual conference that just ended today. 

Once a year the best and the brightest get together to report out new scientific research discoveries, this year as you might imagine there was a lot of discussion about the artificial pancreas closed loop system. It’s also the best place to roam through the exhibition hall and see what new devices are coming to market, and I hear there are also now presentations on the behavioral aspect of managing diabetes.

Amy wrote two posts on what she found there which I encourage you to take a look at. It’s an easy way to get yourself up to date pretty quickly on what’s going on in diabetes research and products and catch some of the highlights of the conference:

What’s Hot from ADA 2012

ADA 2012: Diabetes Company Updates from the Expo Floor

Back from the International Diabetes Federation World Congress in Dubai


The lovely David Edelman of (with a friend)

It’s been an amazing two and a half weeks. December 2nd I left New York for the International Diabetes Federation World Congress in Dubai. 

More than 15,000 attendees arrived for the conference and I reported its opening on the Huffington Post

In between running to press briefings I got to hang with a number of fellow diabetes bloggers and do a night on the Dubai-town. 

Pictured here are Cherise Shockley of Diabetes Social Media Advocacy, Elizabeth and David Edelman of and Manny Hernandez of Diabetes Hands Foundation and TuDiabetes.

Here is the Congress in pictures(and captions), thanks to my husband and newly minted press photographer.

How many ways can we “Take the next step” with our diabetes?

As Thanksgiving is tomorrow, and I’ll be off eating turkey, I’ve been reflecting the past few days how thankful I am and how fortunate I’ve been this year in both my personal and professional life. One of my professional joys and accolades has been the many presentations I’ve given this year at health events and conferences, and I’ve loved them all. For a girl who grew up quiet and shy, I love educating and inspiring a group. 

I spoke in April at Diabetes Sisters’‘Weekend for Women’ conference to 100 women, and helped them see their unique strengths to manage diabetes. In July, at Children with Diabetes’ ‘Friends for Life’ conference, I invited patients to explore and share their healthy habits, discover their personal reason for doing the work diabetes demands, and look for 1 positive thing diabetes has given them. Not one turned away scoffing.

Early in the year I spoke at an American Diabetes Association conference in Madison, Wisconsin to diabetes educators, and I closed the year with the third of my ‘Take the Next Step: Get Motivated’ programs that I do with fitness trainer Kim Lyons, (sponsored by Pfizer) at TCOYD

‘Take the Next Step: Get Motivated’ is an educational program about diabetic peripheral neuropathy (DPN), a complication of diabetes a reported 20% of patients get. It’s characterized by stabbing, throbbing, tingling or numbness in your feet and/or hands due to nerve damage. It’s highly likely many more than 20% of patients have DPN. But as I learned giving the program, many patients don’t associate DPN with diabetes. Many others are ashamed or embarrassed to talk about it with their doctor, assuming it’s their own darn fault.

The best way to keep DPN from progressing is to manage your blood sugar. Kim and I share basic tips about managing blood sugar and diabetes – healthier eating, getting more activity – chair exercises if you can’t walk easily – taking your meds, and we share tips for living with DPN. Right now there are some great easy exercise videos Kim leads you through you can check out on You’ll also find help for how to talk to your doctor about DPN. Please don’t let DPN, a very real and uncomfortable complication of diabetes, shame you away from getting the help you deserve from your health care provider. 

I like the title of the program. Living with diabetes, ‘Take the Next Step: Get Motivated’ can apply to anything that’s next up for us in our care. Maybe it’s time for you to take the next step to eat a little healthier – trade French fries for broccoli once or twice a week. Or take a step to move a little more – walk up a flight of stairs instead of using the elevator. Try lifting soup cans while you’re watching TV. Perhaps your next step is to know your blood sugar numbers better. If so, test a few more times this week. 

In the presentation, I share two stories of people I’ve interviewed, Tom and Arlene, who have type 2 diabetes and DPN and have not let it slow them down. In fact, it may have sped them up; Tom and Arlene are each about 70 years old and extremely active. 

When Tom was diagnosed at 52 with burning in his toes (DPN), he was, as he told me, a bona fide couch potato. His doctor said his DPN wouldn’t get any better. Tom swears it hasn’t gotten any worse and he’s so busy biking 50-70 miles a week he said he wouldn’t notice anyway. Arlene is leading hikes, snowshoeing, kayaking, and has climbed all the Appalachian mountains. 

I hold Tom and Arlene up as examples of ordinary people doing extraordinary things because they decided when they were diagnosed to be brave and “take the next step.” To not let diabetes stop them, but in fact have it motivate them to make their lives bigger, fuller, more satisfying and more active.

What’s your next step? If you’ve got one, why not take a baby step toward it today?

‘Friends for Life’ always delivers just that

The grand hall


Sponsored by Roche


Me and Kerri Sparling 


Tweeters abound


Canines detect hypo and hyperglycemia


Crystal Bowersox rocks


Entranced by Crystal 


Ironman Jay Hewitt



“Basal and Bolus aren’t Disney characters,” laughed Jeff Hitchcock gently chiding my husband. We were standing in the Disney Coronado Springs hotel on the last evening ofChildren With Diabetes’ (CWD) annual ‘Friends for Life’ (FFL) conference.

Each year Jeff Hitchcock, CWD’s founder and Laura Billetdeaux, who’s grown this haven for families who have children with type 1 diabetes (from 500 to 3,000 attendees) host a 4-day educational, recreational, Disneyworld-hopping and bonding event. And sure enough, kids go away with new friends for life. For the first time this year adults with type 1 diabetes were also invited and I’d bet they also made some new friends for life.

I was there to inspire parents and fellow patients through three presentations/workshops I gave, including one sponsored by Roche. I also love catching up with the friends and colleagues this unique event brings together every year.  

From my two workshops, “Flourishing with Diabetes” and “inspired Diabetes Self-Management” I collected Positive things about living with diabetes and Healthy habits and will post them later this week.

The event kicked off with the opening of the exhibition hall. No exhibition hall I’ve walked exudes more passion and unbridled joy than the one at FFL. Later that night, the tweeters were outside in full force lighting up the internet en masse. Among them were Scott Johnson,Kerri SparlingGeorge Simmons,Lee Ann ThillScott Strangeand the folks from Diabetes Advocates,which actually includes me.

The next morning I was on the roster early to talk about the mindsets we hold living with diabetes – coping and flourishing – and how to move more in the direction of flourishing. At the end of my workshop I met a new attendee, I want to say Becca, but forgive me if I got her name wrong. What I do remember is she’s one of the many dogs being trained to detect high and low blood sugars, how incredible!

I attended a few presentations in the afternoon and striding the long corridors filled with red-shirted ‘Friends for Life’ t-shirts, bumped into pump-trainer/CDE Gary Scheiner, J&J’s Paul Madden, TCOYD’s Bill King and family therapist, Joe Solowiejczyk.

Joe was utterly surprised on banquet night by a celebration in his honor – he reached 50 years living with diabetes this year. And as he said so touchingly in my “Flourishing” workshop, he was somehow holding onto the idea that at 50 years it would all be over, and was sorely disappointed to realize it wasn’t. When I heard him say this I thought, yes, I can well imagine feeling the same 11 years from now.  

Crystal Bowersox got the house rocking on the last evening playing guitar and singing on stage. Her introduction by DRI VP and dLife’s “Diabetes Dad” Tom Karlya, was not to be missed. Her music is rich and soulful and she was facile interacting with the kids all gathered at her feet. At 26 years old, she was a perfect young mascot for them. 

The conference closed with an inspiring speech by Jay Hewitt, type 1 Ironman Traithlon athlete. I will take away three things he said that resonate with me: “Turn the bad thing that happened to you (diabetes) into the best thing that’s happened to you. Each day work toward your personal finish line whether anyone’s looking or not, and failure is a part of succeeding. Don’t let it stop you.” While I think you’d have to be crazy to swim 2.4 miles in the ocean, bike 112 miles and then run 26 miles, (an Ironman triathlon) it’s all the more unbelievable that Jay does it again and again with type 1 diabetes.

The best way to share the event is in pictures of course, so here are a few of the hundred my oh-so-proud husband took. 

Here is also a salute to the roster of sponsors, and all who come every year, presenters and attendees, to learn, hug, laugh and draw strength and inspiration for the days in-between July’s annual FFL conference.

Thank you Jeff and Laura. Thanks also to Roche for sponsoring my presentation, “P is for Perfection and Knowing It’s Not The Goal.”