THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Showing posts with label DOC. Show all posts
Showing posts with label DOC. Show all posts

Tuesday, September 11, 2012

adieu


He liked to drive (and wreck) cars.  He had a knack for remembering specific things involving numbers.  He enjoyed cutting wood...with a chainsaw.  In fact, he had his very OWN chainsaw...that his wife may (or may not) have known about before he bought it.  After his father had a stroke, he stepped in to take over the family business:  A bakery.  He went to Germany to apprentice in baking...and if he knew that his raisin danish was your favorite, then he made sure you got all the leftovers.  He made countless wedding cakes for friends and family.  As a small business owner, he always seemed to have position to fill at the same exact time someone in his life may have needed a job.  Building relationships with his children was of paramount importance -- even if it meant he hardly got any sleep after working such long days.  Bartering for goods and services in lieu of money was commonplace, and his word could be counted on.  Period.

My favorite story was hearing about how his parents would put him in a playpen near the bakery's oven, and give him a stale loaf of french bread for a teething biscuit!!

There was also the time he crawled through Meri's parent's kitchen window when no one was home and fell asleep on the couch.  You see, he was a hard worker, keeping long hours at the bakery, but he also wanted to spend as much time as possible with Meri.  Breaking and entering,  and then napping on the couch while waiting for the family to get home seemed like the most sensible solution to a lovestruck young man.

There was more than one mention about how many people were there.  The church hadn't ever seen as many people in the chapel at once, and a dozen or more rows of chairs needed to be added for overflow seating.

Ryan was an amazing man.  It was clear that everyone who knew him, loved him.

But no one loved him more than his devoted wife, Meri.


I won't lie.  It was emotional...seeing her sitting there, in the front row.  The boys shuffled down, so this one could sit beside her -- then a shuffle again, so that one could lean against her, under the comfort of his mother's embrace -- one shuffled to the end and traded places with another -- someone moved to sit between his mama and Aunt Lisa -- then someone else shuffled over to take up the empty spot.

Meri is the mama.  Even during these most difficult moments -- sitting at her beloved husband's memorial service -- she was still the mama, and only her arms could comfort them.


I sat between Manny and Tracy.  We laughed and cried at the stories shared.  You couldn't help but to smile most of the time, even when your heart ached over the reality of why everyone was there.

I will not soon forget the image of Meri and her boys following Ryan's casket out of the chapel. This was, perhaps, the most emotional moment for me...it's hard to describe the stabbing pain in your heart when your eyes meet those of your friend as she fights to put one foot in front of the other, knowing that all of the tomorrows are waiting.

The tomorrows without Ryan.

----------------------------

I had been suddenly very emotional the morning that Ryan died. During the night, I got a message from Hallie that her husband had woken from sleep with chest pain...he was having a heart attack, and was whisked off to the cath lab faster than anyone could say "blocked artery".

After hearing that news, and spending quite a bit of time reflecting on Ryan and Meri...I just needed my husband -- wanted my husband -- to be close.  It wasn't until a few hours later that I would learn of Ryan's passing.  Almost immediately, and without knowing any details surrounding the arrangements, Mr. Rose began looking at travel options.  He just knew.  He knew I had to go.  He said we'd make a road trip if we had to, but there was no way he would let me miss it.  I love him for that.  For understanding how genuine these friendships are.

Tracy called the next day, and it was decided.  We would go together.  In fact, Tracy's parents, Bev and Lance, generously paid for both of our airline tickets.  They explained that normally they would send a spread of flowers...but they wanted to send Meri her friends instead...


It was a whirlwind trip, and I'm so grateful to April for taking us in.  Her home is absolutely beautiful, and I felt as though I was nestled in a french villa when we woke up the next morning...rolling hills and a pasture of sheep...it was amazing.  She thought of everything -- there were gluten-free muffins and cupcakes waiting, along with a fridge stocked with water and a big bowl of fruit.  She was so welcoming and kind and gentle.

The DOC is full of such amazing people.  In addition to Manny, Tracy, April and myself, many others them came from near and far...Sarah, Ivy, Susan, Ashley, and Beth pop into my mind immediately.  April and Susan jumped into action, preparing salads for the luncheon and then staying to help clean up long after the family left to attend a private burial service.  Tracy and I set off to catch our flight back to Phoenix immediately following lunch, but not before hugging these wonderful people first.  What a blessing the DOC is.

Tom Karlya and his family sent a beautiful floral display.  The Diabetes Advocates sent a plant to represent hope.


Thank you, everyone, for your continued prayers of support.
I know Meri could feel the love from all of you.

I know, because I felt it too.

Donations are still being collected in support of Meri and her boys HERE.

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Wednesday, September 5, 2012

I'm not really sure where to start this post.

I've written it a million times in my heart, but still have no idea what to say.

I suppose I'll go back to the beginning...

I started blogging in August of 2008 using a different URL. (It's since been archived and made private.)  Just about exactly 1 year later, I stumbled upon someone whose friendship would become a very special influence in my life...


At first there were just blog comments.  Then an occasional email.  Facebook was just gaining momentum at that time (or at least for US it was, anyway), and many of the names and faces in the Diabetes Online Community (DOC) were still new to us.  There was a small network of moms blogging about life raising children with diabetes (CWD), and we kept up with each other through our respective online journals.

Eventually we decided to take things to the next level.  Yes, my friends...we started to chat.  As in REAL TIME, REAL LIFE banter.  We picked a date and time, and threw it out there to see if anyone else wanted to join us...

(I blogged about it for D-Blog Day in November 2009...)


We chatted every Sunday evening at 7pm (PST) for...probably about 18 months!  New moms came and others moved on.  But some of us were there just about every. single. week. from that very first chat.

And Meri was one of them.

Whether through blog comments, emails, texts, FB messages, or tweets (okay -- not a lot of tweets, but some!)...Meri and I have been in touch with each other almost every single day since the day I found her online three years ago.

You can call it cyber-stalking.  

Or weird.

You can call it nontraditional.

Or say it doesn't count.

But I call it F R I E N D S H I P.

And, even if our friendship is based online...

It's very real.

Over the past few years, Meri and I have discovered just how parallel our lives have been -- yet distinctly contrasted at the same time.    

When Meri and I met for the first time, we squealed like school girls.  We took pictures.  We cried.  I had the pleasure of sitting at her kitchen table over breakfast while she and Ryan shared their love story.  We talked about each of their son's individual diabetes diagnosis, and I witnessed them tag-team carb counting while keeping tabs on who had bolused for what.  

Ryan made Sugar and me some gluten-free pancakes...and I remember the way Meri was laughing while trying to tell him to be careful about cross-contamination -- she talked, he talked, she talked, he talked...laughter....more laughter....and then he stood tall, put his hands on his hips, and declared like Superman...

"WHO IS THE BAKER HERE?  I am the baker.  You go sit down with your computer and do whatever you guys do while I work in here.  Do not disturb the master!"

His bold statement stopped Meri and I in our tracks before we erupted into laughter and wandered out of the kitchen.

It was a hilariously perfect moment.

And it was very, very REAL.

So....

On February 26, 2012...my heart sunk -- or maybe it just stopped beating completely, I'm not sure -- when she sent a message to a few people to say that her husband had spent the day at the ER, and six brain tumors had been discovered on his CT scan.  It would appear the melanoma diagnosis from 2009 had resurfaced, and was rearing it's ugly head...with a vengeance.

I felt so helpless.  So far away.  So afraid for what this could mean for my friend and her family. I posted THIS FB message pleading for someone, anyone, EVERYONE to start praying for my friend, her husband, and their family.

Two days later, she told the world.

In the 187 days that followed, I watched in awe with everyone else as Meri fought through the statistics and the odds to remain hopeful and devoted to her husband through love and faith.  I shared their victories and cried over their struggles.

Throughout his battle, Ryan proved to be a valiant provider for his family.  He loved deeply, and set an example of honor for his sons.  His devotion to Meri was unwavering, steadfast, and endless.    He was a determined fighter and never backed down from fear, even if the journey seemed overwhelming and intimidating.  

On Saturday, Meri and I had a few exchanges.  Her last message sounded upbeat and optimistic.  Ryan had been experiencing some increased muscle weakness over the previous days, but a plan was coming together to help the situation.  Meri was feeling good about getting through the holiday weekend until she could make some phone calls when all the offices re-opened after Labor Day.  Life was coasting along for the Schuhmacher Family.

And then there was Sunday, 9/2/12.

Despite the nature of his diagnosis, Ryan's death was sudden and unexpected.  His loss will leave a hole in the hearts of everyone who knew and loved him.


A celebration of Ryan's life will be held on Saturday, 9/8/12.

Visitation from 9:30-10:30
Memorial Ceremony to commence at 10:30

The DOC is welcome.
If you are interested in attending, please email me for additional details.
candyheartsblog@gmail.com

A giving page has been established in support of Meri and her sons.
Your generosity is appreciated HERE.
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Thursday, July 26, 2012

#FFL12 - Warm Fuzzies Wear Glasses

Have I mentioned Sugar's recent retinal exam?


The one she had at the 2012 CWD Friends For Life Conference?


You know...the one where I was completely fascinated by this...



Right.  That one.

Well...there was another finding we learned that I sort of glossed over.

Nothing major.  {Easy for *me* to say!}  No diabetes complications, or anything.  

Just that the doctor suspected she would need to be evaluated for glasses.

She heard him say it, and whipped her head around to look at me with panic written all over her face.  I kept a smile, and told her not to worry about it...we'd have her doctor check things out when we got home.  I didn't want to let it ruin the rest of our trip.

So...fast forward to a few days ago, when she failed the vision screening at her annual well-visit.  And then, the following day, when we got her in for an eye appointment to get a final verdict.

She was none too pleased.

"No one will think I'm pretty."

"What if someone tries to bully me?"

"What if they make fun of me on the playground because of having a pump AND glasses?"

I tried to tell her that nothing can steal her beauty.  I tried to reassure her that a bully would never be tolerated. I tried to say all the right things...  

"WELL IT'S EASY FOR YOU TO SAY, M  O  M  YOU HAVE A PERFECT PANCREAS AND PERFECT EYES!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!"

Ouch.

But she was right.

I found myself at a loss for words.  All I could do was shut up and hug her.

I posted something on Facebook -- you know -- because when a mom doesn't know what the heck to do with a situation, she turns to her friends to see if they've ever dealt with something similar.  I was looking for something encouraging to share with her, words of advice, someone to listen.

By the time we returned home from her appointment a short time later, my Twitter feed and Facebook notifications had exploded.  Soon a personal message from Tom Karlya arrived.  Reassuring comments, pictures of people with their pumps AND glasses...and chatter of Sara, Kim, and Jess collecting pictures for "a little video".

Well.  

Here.

Because I really can't find the right words to explain what happened...

 

All I can say is...

Well, I don't know what to say.  Thank you doesn't seem to cover it.

Watching it reminded me of what it felt like to be at FFL just a few short weeks ago.  The warm fuzzy feeling of community, friendship, and family.  The sense that everyone around you "gets it".  Smiling faces, silly faces, video snippets, and ROCKING dance moves {here's looking at you, Alecia}.  

I want to reach through the computer to hug each person...and each person who sent a pic that wasn't shown...and each person who wanted to send a pic, but didn't see the message in time...and each person who even thought they MIGHT have a pic to send...and each person who has watched it and commented somewhere.

Warm fuzzies.

I just want each of you to know how incredibly touched I am.  How touched WE are.

So...here's a peek of what last night looked like on our end...

I hope you can see the joy.  The unspoken words of sisterhood. 

(Also, if you happen to see a basket of unfolded laundry and shoes scattered about, just ignore them.)

Sugar takes things in quietly, and reflects on them by herself before sharing her feelings about something.  Tiara...well, Tiara is a firecracker who expresses herself with as much drama as possible at any given moment.  Tink is a comedian who finds any reason to laugh FIRST and then allows deeper emotions to emerge.

You may want to keep those personality traits in mind while you watch this.

From the bottom of our Candy Hearts...


Oh...PS...The "Beautiful" video was published on 7/25/12.  Sugar was diagnosed with T1D on 7/25/05.  Seven years of memories, thanks to insulin...and a million more memories to come, thanks to awesome friendships found in the DOC!

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Wednesday, April 18, 2012

Transforming Lives - Notes

Transforming Lives:  Diabetes Today and Tomorrow was an incredible outreach conference event sponsored by the JDRF Desert Southwest Chapter.  Today I'd like to share some of the notes Mr. Rose and I took during our conference experience:

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.

The day started with an opening keynote by Dr. Peter Chase.  Dr. Chase authored Understanding Diabetes...also known as "The Pink Panther Book".  "The Pink Panther Book" was an instrumental tool for Mr. Rose and I after Sugar was discharged from the hospital following her diagnosis in 2005.  I read it from cover to cover, highlighted many sections, earmarked numerous pages, and carried it with me in her diaper bag everywhere for the first several weeks.  It truly was the foundation for our crash course in Type 1 Diabetes management.  After coming home, I could barely remember anything we learned during her hospitalization.  Thank goodness for "The Pink Panther Book"!  Suffice to say that, for me, the opportunity to hear Dr. Chase speak was quite an honor.
  • A1c target goals that he believes lead to the best chance of life without diabetes-related complications: 
  1. Ages 6 years and under:  7.5% - 8.5%
  2. Ages 6 years thru 12 years:  Less than 8.0%
  3. Ages 13 years thru 19 years:  Less than 7.5%
  4. Over 19 years:  Less than 7.0%
  • Noted that DKA is the leading cause of death in people with Type 1 Diabetes who are less than 30 years of age.
  • Discussed importance of not over treating low BG's, and reminded audience that a BG of 80mg/dl is a NORMAL BG.  80mg/dl requires treatment if the person is believed to be dropping further (i.e. "feeling low", other physical symptoms, or an accurate CGM reading indicating that blood sugar is dropping). Stated that a "true low" BG is less than 60mg/dl, and emphasized that everyone spends part of their day in the 60mg/dl - 70mg/dl range.
  • Reported that globally the incidence of T1D is rising at a rate of about 3-5% per year.  It is believed that "something environmental" can be attributed to the rise.
  • Also reported his research indicates that approximately 75% of "bad lows" occur at night.
________________________________________________________

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.

Next, I attended "The Teen Age:  Managing Type 1 Diabetes During Adolescence".  I don't have very many notes from this session, because Tink had become restless in the KidZone and I was called out to tend to her.  (She just needed her mama for a bit...well, at least until Cherise offered up her snazzy iPhone and found a Dora show for her to watch.)

Dr. Woodward Tolle authored a workbook titled Help with the Hard Stuff.  This workbook is designed for T1 teens and their parents to work through over the course of 9 weeks.  Here's the description from Amazon:
Help With the Hard Stuff is a workbook designed for teens diagnosed with Type 1 diabetes and their parents. Living with Type 1 diabetes is difficult enough for adults, but for teenagers it adds to the already increased stress of social pressures, self-awareness, and responsibility. This workbook can help the whole family better understand basic diabetes information and important facts associated with good diabetes care. It also provides evidence based cognitive-behavioral strategies that can be helpful in facilitating health behavior changes, such as when problems arise with treatment adherence. Help With the Hard Stuff is designed to assist in making the transition in care from parent to adolescent smoother and more successful. It does this by addressing key factors that are associated with better adherence such as self-monitoring of blood glucose, coping effectively with a chronic illness, gaining social support, improving family communication. It also assists parents in learning how to provide autonomy-promoting support and provides a glossary of commonly used terms in addition to a section with resources for more information.
________________________________________________________

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.

Meanwhile, Mr. Rose attended "Managing Blood Sugars During Sports and Fitness Activities". Gary Scheiner authored Think Like A Pancreas, another book I would consider to be one of the most helpful tools I've encountered in preparing me for the journey of raising a child with diabetes. I've also attended several of Gary's online classes through Type 1 University, and not only do I find him to be a wealth of valuable information, but he's an awesome presenter as well! 

  • Optimal BG for strength, stamina, speed/agility, flexibility, safety, and mental sharpness is 140mg/dl.
  • If exercising for greater than 90 minutes, small snacks should be taken without insulin coverage during the duration of activity.  (An example would be a couple jelly beans periodically while exercising.)
  • Once the temperature reaches 90 degrees, insulin begins to break down, and lose it's effectiveness.
  • Other variables that affect exercise:
  1. Active insulin
  2. Insulin site
  3. What has been eaten
  4. When it was eaten
  5. Emotional state
  6. Temperature and humidity
  7. Pain/Discomfort with activity
  8. Amount of activity


_______________________________________________________

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.

NEXT UP:  The DOC: Diabetes Online Community!  HOLLA!  WOOT WOOT!  I had the honor of introducing these awesome speakers to the audience :)  And they had some pretty interesting things to share...

  • Social media isn't a fad.  It's a fundamental shift in the way we communicate.  
  • If Facebook were a country, it would be the THIRD largest populated country in the world.
  • Together the DOC has completed and shared petitions, participated in the Big Blue Test, and battled misconceptions in the media.
  • Ways to evaluate social media resources:
  1. Does it agree with clinical standards?
  2. Are there accessible and readable privacy policies?
  3. Are there controls on sharing personal data?
  4. Are there honest disclosures?
  5. Are there any voluntary accreditations?
It was fun to see some familiar faces during the presentation, even though they weren't there in person... Hi Kelly, Mike, George, and Scott!


And I laughed when my Facebook page popped up there...


Anyway, the DOC session was fun to watch unfold after several conference calls spent piecing it together.  I thoroughly enjoyed every moment of the time I was able spend with my friends, and hope to have the chance to hang out with them again :)
_______________________________________________________

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.

Dr. Kowalski delivered the closing research keynote address.  I have to admit that I didn't take many any notes as I was captivated by the oddly familiar inspiration happening inside.  I remember attending research updates shortly after Sugar's diagnosis, and feeling empowered and motivated.  Somewhere in the last few years, I lost my ability to feel those things about research and technology.  I mean, I've kept up with it, but I often find myself building a wall around my bubble of HOPE.  Rather than allow it's energy to permeate my heart and soul, I tend to turn off the switch and move on with the day-to-day grind of raising a child with diabetes.

It felt good to feel hopeful again.

Anyway, I had the pleasure of hearing Dr. Kowalski a few years ago, and remember thinking that he was so personable and easy to understand.  Sometimes "research chat" gets over my head and intimidating, but both times now that I've heard him, that hasn't happened.  I'd highly recommend anyone take the opportunity to hear him if you have the chance.

I found comfort when he discussed the Artificial Pancreas Project.
I found comfort when he discussed micro/macro encapsulation and beta cell regeneration.
I found comfort when he discussed potential vaccinations to prevent T1D from developing.

I found HOPE (again) in Treatment, Cure, and Prevention.

This is Part 2 of a 3 part series.  Stay tuned as I share my closing thoughts and personal impressions. More on Transforming Lives...


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