THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Monday, April 16, 2012

Transforming Lives - Overview


The title couldn't have been more fitting.  For many reasons, "Transforming Lives:  Diabetes Today and Tomorrow" was a conference experience I'll never forget.

For starters, I was invited to help coordinate a breakout session that would focus on the Diabetes Online Community (DOC).  This meant I had the opportunity to listen and observe via a series of conference calls as Bill Woods, Cherise Shockley, and Manny Hernandez (pictured below in that order) collaborated to create their presentation.


It also meant I would have the opportunity to meet them -- IN. REAL. LIFE!  Not only that, but Mr. Mike Lawson lives across town, and he came to hang out too!  (You do know Mike, right?  Doesn't EVERYONE know Mike?  If you don't know Mike, then get to know his Mirror Mantras, and plan to be inspired.)

I KNOW!  MY TRIBE!!!!!  Could it be any more amazing?


Well, YES, actually.

Because not only did I have the chance to hang out with these virtual-turned-real friends of mine, but JDRF brought in an ALL STAR line up to round out the entire event.  Check this out:


Aaron KowalskiAaron J. Kowalski, Ph.D., oversees JDRF-funded research aimed at accelerating the delivery of therapies that will help keep people healthy while living with type 1 diabetes, minimizing their risk for developing diabetes complications, as well as therapies that will help those who have developed diabetic complications. Dr. Kowalski is an internationally recognized expert in the area of diabetes technologies and has been a leader of JDRF’s Artificial Pancreas Project, a multi-million dollar initiative that began in to accelerate the progress toward a closed-loop automated insulin-delivery system. He has authored numerous articles in the field, including a landmark study in The New England Journal of Medicine which revealed the effectiveness of continuous glucose monitors in type 1 diabetes. Dr. Kowalski has traveled widely across North America and abroad describing diabetes research progress, and is known for his ability to translate science into easily understandable concepts.  Dr. Kowalski will deliver the keynote research update.
H. Peter ChaseH. Peter Chase, MD is the Executive Director, Clinical Director, Director of Pediatric Clinic, Emeritus and is currently Professor of Pediatrics at the Barbara Davis Center for Childhood Diabetes, University of Colorado.  Dr. Chase studies the use of continuous glucose monitors in youth and the development of algorithms to prevent hypoglycemia using a closed loop system and screens family members of patients with type 1 diabetes to detect those at high risk for possible participation in prevention studies.  He is the well-known author of the three most frequently used family education books using the Pink Panther character as well as over 300 research articles and book chapters.  Dr. Chase will deliver the opening keynote.
Gary ScheinerGary Scheiner MS, CDE is the Owner/Clinical Director of Integrated Diabetes Services.  A certified diabetes educator, masters-level exercise physiologist and person with type 1 diabetes, Mr. Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes.  Mr. Scheiner has authored four books:  You Can Control Diabetes, Think Like a Pancreas, The Ultimate Guide to Carb Counting and Get Control of Your Blood Sugar.
Lauren Woodward TolleLauren Woodward Tolle, Ph.D. is a licensed clinical psychologist in Denver, CO.  Lauren completed her doctoral work at the University of Nevada, Reno and postdoctoral work at the University of Colorado School of Medicine. Lauren also has a Master’s degree in Applied Health Psychology from Northern Arizona University. Lauren’s research interests include evaluating clinical outcomes of evidence-based practice in primary care as well as pediatric settings.  Lauren has conducted research and published in the area of improving diabetes management and family communication for adolescents with type 1 diabetes. She greatly enjoys working with this population. In her spare time, Lauren enjoys spending time with her family including her newborn son, Liam, in beautiful Colorado.
Joe SolowiejczykJoe Solowiejczyk, RN, MSW, CDE is the Clinical Manager of Counseling & Presentations for Animas Corporation, a Johnson & Johnson company.  A healthcare professional who has lived with type 1 diabetes for over 40 years, Mr. Solowiejczyk is able to translate his personal experiences into patient care.  As a nurse, diabetes educator and family therapist, he specializes in assessing how family dynamics impact the management of diabetes and designs interventions that result in more effective coping and optimal metabolic control.
Manny HernandezManny Hernandez heads the Diabetes Hands Foundation, a nonprofit that connects, engages and empowers people touched by diabetes through its social networks, TuDiabetes.org (in English) and EsTuDiabetes.org (in Spanish) and programs like the Big Blue Test and No-SugarAdded Poetry. Diabetes Hands Foundation offers information and support to nearly 200K people around the world every month.
Cherise ShockleyCherise Shockley was diagnosed with Type 1.5/ LADA (Latent Autoimmune Diabetes of Adults) in 2004. She is the Founder of Diabetes Social Media Advocacy (DSMA) a real-time communications resource for the diabetes community, their family members and caretakers. She is moderator of the DSMA twitter chat (diabetessocmed.com), and co‐host of “DSMA Live” (blog talk radio show). Cherise is a contributing author to “MY SWEET LIFE: Successful Women with Diabetes.” 
Bill WoodsBill Woods  is the founder of 1HappyDiabetic.com a website that encourages people with diabetes to live a happy and healthy life.  Mr. Woods  was awarded the 2009 TuDiabetes.org Creative Mind award voted on by the diabetic online community.   His award winning videos for “Making Sense of Diabetes” led the way in spreading awareness of diabetes through internet video creation.
Seriously.  We're talking the CREME DE LA CREME of top notch experts, authors, and researchers.  All gathered together in one palace place, the Arizona Biltmore.


Now, I have never had an occasion to visit the Biltmore before, so let me tell ya...that place is incredible.  The Biltmore kindly donated much of the conference amenities in order to provide the best atmosphere possible for this venue.  The entire event was FREE to our local community, and it even included LUNCH!  Every attempt was made to accommodate any dietary need -- from gluten-free and vegetarian meals to requests for matzah bread.

And, then there was this...


Hello, Conference-Focused-On-Type-1-Diabetes!!!!  An easily accessible "Low Station" stocked with juice boxes and snacks (including some gluten-free ones!!!).  When I say that no detail was left uncovered, I seriously mean it.

There was room for 100 kids (CWD's and their siblings alike) in the KidZone, where the YMCA provided a fun environment under the supervision of medical staff who were trained in the management of Type 1 Diabetes.  KidZone was also completely stocked with juice, non-carb drinks, and a variety of both regular and gluten-free snacks.

Along with a host of amazing vendors, Hasan Shah from JDRF Advocacy provided enthusiastic encouragement to help motivate and empower our very own Desert Southwest families with the tools necessary to become advocates themselves.  Andrea Hulke, JDRF National Director of Outreach, and Marcy Arroyave, the Outreach Manager from the Nevada Chapter, were both in attendance to support the event as well.

In addition to advocacy opportunities, attendees were able to sign up and participate in TrialNet right there, on site. Taken from the TrialNet website:

Type 1 Diabetes TrialNet is an international network of researchers who are exploring ways to prevent, delay and reverse the progression of type 1 diabetes.

{Sidenote:  Our entire family participated in TrialNet, and I'd encourage anyone reading this with a T1 family connection to consider doing so as well.}

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach event for this community.  I cannot express enough how honored I am to have such an amazing JDRF staff in our corner as we wage the war against Type 1 Diabetes.  From my view behind the scenes, I can attest to the dedication, hard work, and personal sacrifice made on behalf of the amazing team known as the JDRF Desert Southwest Chapter.  Not only did these people invest their time and talents to bring this venue to Phoenix, but many of their loved ones and family members played a crucial role throughout the process as well.  Whether running countless errands during the planning phase, picking up/dropping off speakers at the airport, or loading and unloading supplies before dawn, there were many people who provided immeasurable support.  They helped to keep things running smoothly from beginning to end, and EVERYONE did a fantastic job.

My hat goes off to the teamwork I witnessed throughout the planning and execution of this amazing conference.  I hope we have the opportunity to bring a venue such as Transforming Lives to Phoenix again.

This is Part 1 of a 3 part series.  Stay tuned as I share my notes from the presentations I attended up next, followed by my closing thoughts and personal impressions.



Part 1:  Transforming Lives - Overview 
Part 2:  Transforming Lives - Notes
Part 3:  Transforming Lives - Closing Thoughts


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5 comments:

  1. Wendy you are truly a special person, it was so great to meet you and your family. Thanks so much for all your help and positive attitude! Miss u guys. - Bill from 1happydiabetic.com

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  2. That looks like a wonderful meeting!! So glad that you got to attend! Looking forward to hearing more :)

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  3. It looks fantastic and the low station, what a great thought.

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  4. What a great initial recap, Wendy. Thanks for being a part of this and representing, and sharing it here. Awesome lineup and that low station = COOL IDEA!

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  5. Looking forward to hearing more! Hasan and the JDRF crew are pretty amazing, aren't they? I don't think they ever sleep!

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.