Tuesday, July 30, 2013

Your invitation to FIGPICKELS TOY EMPORIUM's "Carson's Journey" event!!

Figpickels Toy Emporium owners, Brett and Susan Sommers surprised us a few months ago when they chose Carson and JDRF (Juvenile Diabetes Research Foundation) as the recipient of a Charity give-a-way from TD Monthly!   They have been absolutely amazing with their JDRF sneaker sales...raising over $250 in the first 2 1/2 days!  If you stop in you will hear, "Shoe in the Bag!" echo throughout the store when a sale is made....paper sneakers fly through the air into a bag and then get placed on the wall with a BIG, "Shoe on the Wall!"  Train Whistles go off, noise makers blast and people start asking, "How can I get in on this?"  And what an incentive!!!...Each sneaker is a ticket into the giant TOWER OF TOYS donated by several big name toy companies!  AND, Figpickels hasn't stopped there...they have many stores in the Coeur d Alene Resort Shops selling sneakers and giving 10% of their sales to JDRF on Aug. 10!  This is your personal invitation to join us on August 10 for balloon animals, clowns, magic, juggling, and MORE!

FIGPICKELS TOY EMPORIUM kicks off "Carson's Journey"

 Kendama Co pros on their NW Pro Tour stopped by FIGPICKELS to kick off the "Carson's Journey" sneaker sales! Gave Carson a new prototype kendama signed by them all!
Frank Paretti, author, stopped by to buy 5 sneakers in honor of Carson for JDRF! "Mr. Henry" is awesome!

JDRF Children's Congress photo with celebrities and Vice President Joe Biden....look where it showed up next!!!!


                                           Megatron in TIMES SQUARE, NEW YORK!!!!

Advocates Testify at Senate Diabetes Hearing - JDRF: Improving Lives. Curing Type 1 Diabetes

Advocates Testify at Senate Diabetes Hearing - JDRF: Improving Lives. Curing Type 1 Diabetes

Young Diabetes Advocates Take Capitol Hill by Storm - JDRF: Improving Lives. Curing Type 1 Diabetes

Young Diabetes Advocates Take Capitol Hill by Storm - JDRF: Improving Lives. Curing Type 1 Diabetes

Monday, July 15, 2013

People who make a HUGE difference in T1D research!!

                                          The kids themselves advocating on Capitol Hill!!
                                               Michael, Neils, Brian (JDRF superstars)
                                                      JDRF Global partners  head cheese!
                                                            Nova-Nordisk spokesman
                                                      CEO of MEDTRONIC
                                                   JDRF Advocacy Government relations
                                   Camille Nash, volunteer advocacy grassroots extraordinaire!
                                    JDRF's Amanda and Brain clowning around with Carson!

JDRF 2013 Children's Congress Highlights - First Installment

CC13 Delegate Carson, ID

2013 Children's Congress: Promise to Remember Me Song

2013 Children's Congress Town Hall: Role Models in Diabetes

JDRF 2013 Children's Congress Highlights - Second Installment

JDRF 2013 Children's Congress Highlights - Third Installment

Sunday, July 14, 2013

Day 2 of JDRF Children's Congress TOWN HALL

I want to highlight some of the amazing celebrities who were at CC13 ....all of these celebs have T1D and gave of their time to come and be incredibly HUGE role models in the lives of our kids....Carson was chosen to ask a question during the TOWN HALL meeting, which was very exciting!!!

Charlie Kimball, Indy Car race car driver, diagnosed with T1D in 2007 and the first licensed driver with diabetes in the history of the IndyCar to race at the highest level of the series.

Mary Mouser, actress known for her role as Lacey Fleming on ABC's Body of Proof and DISNEY channel star in Frenemies...diagnosed with T1D at the age of 13.

Dr. Aaron Kowaiski, JDRF's vice president  and internationally recognized expert in the artificial pancreas project......diagnosed with T1D at the age of 13.

Nicole Johnson, Miss America 1999, was diagnosed with T1 in 1993.  Here she is with her diabetic alert  labradoodle  dog...soooo darn cute and he alerted her to a low blood sugar while we were talking to her!

Crystal Bowersox, singer/songwriter and American Idol runner up in season 9....diagnosed at age 6.

Leslie Adkins, journalist and writer, NBC assistant producer for DATELINE...diagnosed with T1D at the age of 5.

Gary Hall, Jr has 10 Olympic medals in swimming and is a member of the Olympic Hall of Fame.  He was diagnosed with T1D at age 24.  Gary was chilling out at the pool one night with the few lucky kids that were there and challenged them to a race!  How many people can say they have raced the fastest swimmer in the world!?

Brian Kenny, sportscaster for MLB Network and Brian Kenny show on NBC sports radio. His daughter, Camille, has T1D

Ray Allen, 10 time NBA All-Star who currently plays for the 2013 NBA Champions, the Miami HEAT. He and his wife, Shannon, are the parents of Wlaker, diagnosed with T1D at 17 months old.  Ray testifyed in the Senate hearing on Wed and was soooo incredibly humble and made us all cry!!!

Jean Smart, Emmy Award-winning television, film and stage actress was diagnosed with T1D at the age of 13.  She is known for her many TV roles including those on Designing Women, 24, Frasier and Samantha Who?  She said some very endearing words to Carson and was so kind and compassionate....I was in tears!  Jean also testifyed at teh Senate hearing about her life with diabetes and was so very effective and well versed!  JDRF could not have picked two better people to testify!

And our favorite little guy, Walker,...Ray and Shannon Allen's little T1D...
not quite tall enough for the unicycle yet, but says he is getting one!!

Flashback to Day 1 of JDRF Children's Congress

Just trying to catch up, guys...so many of you were so faithful to check in every evening...only to find us not there!  So Sorry.....much busier than i had anticipated.....advocacy is HARD WORK, but very IMPORTANT!
                                               Hasan, JDRF Advocacy leader of the pack, and Carson
                                          Jeffrey Brewer, CEO of JDRF, and Carson

Carson was asked along with about 14 other CC kids to come early and do a photo shoot for JDRF national publications and one of our sponsors...Build a Bear.  He also had an on camera interview with JDRF....he had taken his unicycle down to the photo shoot to ride during takes and it turned out to be a real hit in the photos...can't wait to see where they show up!  Here is one of the many photos a parent took and posted.

After registration, all 161 kids had song rehearsal and the performance of the "Promise To  Remember Me" song with Crystal Bowersox, runner up of AMERICAN IDOL season 9, diagnosed with T1D at the age of 6.

State Delegation photos were next with Crystal Bowersox and Gary Hall, Jr. 10 Olympic medalist in Swimming, diagnosed with T1D at the age of 24.

The Opening Banquet dinner was a real memorable time, as all the delegates got to take the stage and tell a little about themselves!

 Carson had such a great time passing out clown noses...we even had JDRF BLUE noses...here are some JDRF great interns, Moria, and Carson

This photo was taken at the Publicity photo shoot within 20 minutes of these three meeting....Jonah, Carson, and Austin became fast friends and stuck together throughout CC!

Thursday, July 11, 2013

Day on CAPITOL HILL....Carson meeting with our US Senators and Representative!!!!

So sorry to leave you guys hanging!!  Tuesday night, I could not get internet at the hotel and last night after an incredible, but exhausting day on the Hill, I just had to go to sleep!  I really don't know where to start....this has been one of the most life changing events in my life and in the life of my little boy...I have soooo much to share and so many pics ....so tired right now, but I wanted to share a few pics from yesterday and I will continue to share more each day...

Let me just say I have never been more proud of my 10 year old son!  Carson had three meetings with Congressional members today and a Senate hearing to be a part of...Being the only delegate from his state meant it was up to Carson to lead these meetings by himself....I was with him, but this is his disease and he took full responsibility for getting his message across loud and clear....explaining the bill that needed to be signed and why it needs to be signed by the two US Senators and a US House Representative....and , did he ever turn on the charm..I do not know who could say "no" to this kid.....He Rocked Capitol Hill....and ALL the kids did..It was simply amazing to see 161 kids in Blue CC shirts scattered all over capitol Hill speaking to their Senators and Representatives yesterday!  More later!

 Meeting with U.S. Senator Risch/  Senator Risch was soooo very kind to us and even invited us to ride the train with him over to the Capitol building from his Senate office.  Unfotunately we had yo get over to another senate building in a hurry for the delegate photo with VP Biden....Three great interns took us underground to get there quickly!
 Senator Risch and Carson....Sen. Risch signed on to the letter supporting the SDP last year and will again this year, we believe!
 Congressman Labrador was so kind to stop in and give Carson some time in his office......and although Carson did not get an answer from him about signing the SDP, we believe he was very touched by Carson's story and will give it some serious though!  When Rep. Labrador asked him what his favorite thing he had done so far in DC was, Carson smiled and said, "Actually, Rep. Labrador, meeting you has been my favorite thing to do so far"  Rep. Labrador was visibly touched and said after the day he had had, he really needed to hear a positive compliment......as many of you know, he is right in the middle of the Immigration Reform battle going on....and that is why we were thrilled he took the time in the midst of all that to meet with Carson.
 Rep Labrador wanted Carson to sit in his chair behind his desk for a pic
 Vice President Biden was very kind and had some really encouraging words for the kids...you can see him in the middle next to Ray  Allen...Carson is down toward the bottom mid-left.  Carson and two other delegates were pulled aside by White House Secret Service to get the last pic with Biden,but he by-passed them at the last minute...the Secret service were very apologetic and we were disappointed, but even the Secret Service doesn't have a say in the last minute decisions of the VP!
 Senator Crapo, me and Carson
US Senator Crapo was just the nicest, most encouraging man...told Carson of a family member who has T1D and of his continued support of the SDP bil!  Here Carson is telling him about his scrapbook he presented to him.

 US Senator Crapo told Carson about a family member who has T1D and of his continued support of the SDP!

Carson explaining the letter to be signed supporting the SDP (Special Diabetes Program)

Monday, July 8, 2013

A disease that does not differentiate!!

Ray Allen is here with his wife, Shannon, and little boy, Walker.  REALLY COOL, right???  And it IS, but funny thing is.....I haven't seen anyone ask for his autograph or take a picture with him.....why?  Because this disease called Type 1 diabetes doesn't have a certain population it chooses to attack or  socio-economic preference....it does not differentiate between skin color or nationalities......and Ray Allen and Shannon are here as parents of a T1D, just like the rest of us!  Parents who want soooo badly to see a cure for our children.  As I was talking to Ray at dinner and earlier today as Walker was playing around with Carson, mesmerized  by his unicycle,  I just thought about how we are all on the same playing field....advocating for a cure!   Suddenly, it doesn't matter that Ray Allen is a superstar worth billions of dollars and thousands of people would die to shake his hand or even be near him ...what matters is that he is a loving father who would trade it ALL for a  cure for his little boy, Walker....and that is the SINGLE REASON we are all here at Children's Congress!

Day 1 of Children's Congress and I am already a "mess"!

I really do not know where to start!  I have never in all my life seen my little boy so happy and full of life and joy.....I can only imagine what it must feel like to meet and be in the same place with 160 other kids who have the same disease as you!!  Carson just cried tonight...too full of emotion to even talk....just tears flowing...there are no words!  I am trying to wipe away my tears as I write this.

  We would LOVE to stay in this Children's Congress bubble FOREVER .... to have everyone checking blood sugar and guessing each other's number, to have pumps giving insulin, shots being given, carbs being counted  , juice boxes opened....well, it is a paradise of sorts that only a T1D family can really understand....this world where you aren't "different" or "weird" .....the kind of world, where your 10 year old child ,with a devastated disease, looks up at you with tears streaming down his face and says, "Thank you so much for bringing me here...I am really glad I have Type 1 diabetes so I could come here!"

 It is a magical place where moms aren't "crazy" and "overprotective"..and dads aren't "wimpy" because they shed tears for their precious little boy or girl who lives with a disease that they can't "fix"! We are instant family and we haven't even done what we came here to do yet.....go to Capitol Hill and advocate for a day when Type 1 diabetes is NO MORE!  But, we will be ready come Wednesday, because there is something quite empowering that is happening right now, not only among parents and families, but the T1D's themselves......they are just children, but they have a voice and TOGETHER they can't help but be heard!

LIVE STREAMING OF Children's Congress events tomorrow and Wed....Senate hearing at the capitol...

  • Role Models in Diabetes’ town hall session, hear from those living with type 1 diabetes and how they overcome it every day in their lives—Tuesday, July 9 at 10am (ET) until 11am (ET).
  • ‘Diabetes Research: Reducing the Burden of Diabetes at All Ages and Stages’ hosted by the U.S Senate Special Committee on Aging, will also be LIVE-streamed on the Committee’s site – Wednesday, July 10 at 2pm (ET). Witnesses include:
    • Jean Smart, Emmy-winning TV, film and stage actress
    • NBA All-Star Ray Allen and his son Walker, who is a CC Delegate from Florida;
    • Quinn Ferguson, who is a CC Delegate from Maine;
    • Dr. Griffin Rodgers, Director of the National Institute of Diabetes and Digestive and Kidney Diseases at the National Institutes of Health; and
    • Jeffrey Brewer, President and CEO of JDRF
Again, please remember, find us on the JDRF Advocacy YouTube channel and just look for the LIVE event at the times noted above.

Sunday, July 7, 2013

A day on the Mall!

This is Carson. I had a really a fun time in DC today!  We spent 7 hours at the Air and Space Museum.  It was so worth it!  I really liked the APOLLO exhibits because my granddad worked for NASA and worked on the APOLLO 4 and some more.  I also got to ride in a flight simulator.  We walked to the Capitol and it started raining on the way back to our hotel.  We were soaked.  Tonight at the hotel, I met Olympic gold medalist and T1D, Gary Hall, Jr. and more CC kids!  I CAN'T WAIT TIL THE MORNING !!!!   Here are some pics from today!
 Smithsonian castle
 me in an airplane
 Air and Space museum
 the fam!
 Diabetes never takes a break.....Capitol Hill here I come!!!!!
 getting an insulin shot!