Thursday, May 26, 2011

Heaven's chorus.

Amidst all of the incredible developments we were witnessing last week in New Orleans, we also received news that stopped us in our tracks.

The very first major fundraiser that the Kyrie Foundation hosted was a thrilling union of time and talents. One of those incredible talents being from a homegrown singer-songwriter Kurt Layton and his fellow bandmates, Against the Grain. One of our founding board members, Trish, pulled on the heartstring of her cousin Kurt and voila! We had bona fide entertainment!

And they were amazing.

We were so humbled that this professional Nashville-wrangling group was rockin' it out for the babies.

Soon after that show, we learned that Kurt had been diagnosed with ALS, progressive neurodegenerative disease that attacks nerve cells in the brain and spinal cord. I lost my breath. Kyrie's brain and spinal cord were seized by cancer, and now Kurt's same system was vulnerable to yet another enemy.

You could cry out precisely the same questions that have no answers. It's not fair. His family. His gift of song. God, why?!?

So as we were sharing historic developments with researchers last week, a moment to which Kurt and his band helped us achieve, we learned that he was called to his heavenly home.

I'm hoping that you'll join us as our hearts, our prayers, our tears go out to his family, his wife, his children, his friends. Until we meet again, we will forever treasure your generous gift of song and what you have helped us create for families everywhere. Thank you so much.

Sunday, May 22, 2011

The good is working.

What a week of exceptional goodness.

It was such an incredible honor to deliver you donations this past week, to meet the researchers who you are supporting and to understand our collective role in making the world a better place.

Once again, the Kyrie Foundation was graciously welcomed by the PBTF. We are so grateful to be partners in this formidable task of curing children's brain cancer. And it is because of their years and years of work prior to Kyrie that we all—you and me and your pals and your colleagues and your kids—are coming into the story at a pivotal point.

The idea of collaboration across many teams or many institutions in the medical field is far easier said than done. We are contributing to the moment in this cancer-fighting saga where the story changes.

We were thrilled and humbled to meet so many researchers from the leading pediatric brain cancer research: Duke University Medical Center, Hospital for Sick Children in Toronto, Canada, and the University of California-San Francisco.

We heard dozens of unpublished presentations on the latest and newest developments and ideas in the field. Admittedly, much of the terminology was above and beyond my studies, however, the enthusiasm and the commitment was ever-apparent.

Researchers on our left, in particular, were on the edge of their seats, ready to engage with the information like I'm sure your kids are awaiting their first day of summer vacation.

The apex of the experience was the final dialogue amongst all institutions, a conversation about pooling data—a field first that we all were able to witness!

On Wednesday evening we dined with everyone at the Court of the Two Sisters restaurant in the French Quarter, a scrumptious dinner hosted by the PBTF. We sat with Dr. Frost and his lovely wife, co-founder of the PBTF Diane Traynor, Chris Hoefflin on the PBTF board of directors and the illustrious Dr. Rutka—a table of teamwork of the greatest kind. Prior to dinner, Dianne said a few words to the roomful of scientists followed by a few more words from Chad saying how much all of us believe in the work that these people are doing. Then we handed over the big check!

We unknowingly assumed that these research must get checks like our every other day. We learned how special this grant money is simply by hearing their gratitude firsthand and seeing such delight and surprise on their faces.

So ... know that your dollars are getting the world to the cure. I can't tell you how many times I heard "just wait to see where we are five years from now!" and this is coming directly from the people on the front lines! This affirms how important your support truly is. If you want to see an end to children's brain cancer, this is exactly where you want to be. ;)

A huge amount of thanks to the PBTF for hosting such a powerful event and for getting us all to this point of monumental potential. As for the Kyrie Foundation, let's get started on the next grant!

Monday, May 16, 2011

Pack your bags!

Guess where you're going this tomorrow?

You're coming with us to NEW ORLEANS!!!!!!!!

Uh, thanks, Megan, but why would I be going to New Orleans?

To grant The Kyrie Foundation's second $50,000 to cure pediatric brain cancer! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! ! !  

That's right! You and your family and your friends and your kids and your companies and your business friends and your kids' friends' parents and anyone and everyone has made it possible to bestow another $50K grant dedicated to saving all of the life, creativity and wonder that resides in children's little brains! The Kyrie Foundation has been invited to New Orleans to meet this week with the PBTF for the 2011 Pediatric Neuro-Oncology Basic and Translational Research Conference. We hope to learn that current research status in this saga for a cure and connect with those leading the charge globally.

I'll try to post updates on our Facebook page, so if you're not a fan, you can like us now!

Once again, we are stunned to have reached this second grant so quickly—that is a testament to your goodness. We've said it a million times here on Kyrie's blog: it's the decision to do something, to give a little, to give a lot, to give your time, to connect your resources, to just care—this is what finds the cure. If everyone only knew how powerful the doing part of living is.

These dollars you've raised are just that—raised up in hope for the little ones fighting, raised up in thanksgiving for the little lives making our hearts forever changed and raised up in solidarity against cancer. I typed this with grateful tears ... thank you, thank you, THANK YOU!!!!!!!!!!!!!!!

one of my favs on Color Me Katie

Saturday, May 14, 2011

The Real Champs

At the end of April, the softball team from Andover (KS) Central High demonstrated why they truly are champions.  Their annual 'Hit for the Cure' game helped provide donations to The Kyrie Foundation and our march towards funding a cure for pediatric brain cancer.  As you might have noticed, a great number of these ladies volunteer their time at our events and we could not be prouder of the examples they set for others.

Kicking things off with the Stars & Stripes

Some of the most important reasons we carry-on this cause...

...and will always hold in our hearts

Guys on the grill and lots of volunteer help that was appreciated

A great photo to cap a great event.  We tip our cap to this incredible group who we are proud to call our teammates!

Here's a recap of the event featured on the NBC-affiliate, KSN in Wichita...

Tuesday, May 3, 2011

From the Easter Bunny

Being an only child, I wasn’t always apt to “sharing."  When someone would tell me to “share," it usually meant I had to give up playing with a favorite toy and pass it off to another child.  And as a kid, there really isn’t much joy in that.  No warm fuzzy feeling.  Maybe even some resentment.  So if I were to have based the definition of “sharing” from my childhood experiences, I probably would have looked to avoid “sharing” in my adulthood.  Good thing I gave it another shot.

On our 5th Easter visit to Wesley Hospital Pediatric Floor in memory of Kyrie Dawn Thome, I was reminded over and over again of the whole “sharing” deal.  As we visited sick children, ages 22 days to 14 years old, on April 22, 2011, we handed out toys, books, games, and stuffed animals…all purchased items that friends and family had entrusted us to “share” with those children.  Several different people “shared” their talents of quilting and blanket making so we could hand out specially made blankets to each and every child.  A couple of businesses “shared” their finances with us so we could purchase a QuikTrip Gas Card and a McDonalds Gift Card – for every single family of a sick child that we met.  Six girls from the Andover Central High School softball team “shared” their Friday night with us to volunteer, pulling wagons and hefting duffle bags full of Easter Goodies down the hospital halls.  Even the Easter Bunny’s dad, and Eggbert's mom, “shared” their time and helped sort and haul and hand out items as we went from room to room.  And probably the most touching “sharing” that happened was that of Kyrie’s Nana, and parents, Jordan & Lacie.  THEY continue to “share” their precious little girl and her memory, with us…strangers…just people they come across….so they can plant a seed and do good. 

Every time we visit Wesley Hospital Pediatric and PICU, we are amazed at the staff that “shares” their knowledge and support with not only the patients and their families, but also with us.  Their tireless caring and strength when working with sick children is incredible.  They are somehow able to “share” their love and concern, while keeping a professional and positive attitude no matter if we are visiting a child who is having his tonsils out or if we seeing a child with a life-threatening illness. 

And we always appreciate the parents of the children we are visiting for “sharing” just a few moments of their time with us.  We realize it is stressful, exhausting, and draining to be in a hospital with a sick child, grandchild, or foster child.  We know those parents more than likely aren’t in the mood for joking or bunny hugs.  But they “share” some moments, so their little one can find some laughter and joy on a Good Friday.  They graciously accept Easter goodies that strangers have generously donated…to be “shared” with their child.

Here is where it comes full circle.  I am still an only child…however, a touch older now.  But “sharing” has become one of my very favorite things!  And I cannot express my gratitude enough to the many that have “shared” with me.  “Go Kyrie, Go!”

Bunny Hugs,
The Easter Bunny

Such a tiny bundle of joy!

The Kyrie Foundation Easter Parade

Mom and Bunny visit.

It's all about the love.

A bright spot in the day for mom.

A little patient and Eggbert share the same hairstyle.

Such joy on her face!

Something fun!

More cheer!
Love the do-gooders who help out Easter Bunny & Eggbert!
And the do-gooders who return to spread more cheer!

Ready for the next little visit.

Fantastic young women who  make the world a better place!