So good to hear that cards are being sent to Shane! Love it! I don't know about you, but for me, it seems the more good acts I choose to do, the more I see to do. Heightened awareness, like a flower that turns to face the sun. Have you ever thought about that? How is that possible for a flower with no muscular system to do that?
Which way will you turn?
I think I'm going to write "Go, Kyrie, go!" on all of my mail. ;)
And the cool thing about you having heightened awareness is that those in your circle of influence will be influenced. Your spouse. Your kids. Your parents. Your friends. We learn by example, don't we? Good or bad. Good: How to make Paula Deen's cornbread stuffing on the Food Network. Bad: How to have your priorities way outta whack with "My Sweet 16" on MTV.
So Chad & I have been pulling ideas together for some way to make the world better for Kyrie's sake. And we've decided to start a non-profit organization! For right now, our first tier goal is to eliminate the fatality of PNETs. Twenty years ago, leukemia was thought to be a death sentence. With funded research, today that's not the case. We want the same to be said for brain tumors.
A few compelling facts:
• Brain tumors are the leading cause of cancer death in children under 20, now surpassing acute lymphoblastic leukemia. They are the deadliest type of childhood cancer.
• The incidence of brain tumors is increasing, but the reasons for the increase are unknown.
• Even benign tumors can recur and result in death.
• There are more than 120 different types of brain tumors, making effective treatment very complicated.
• At this time, brain tumor research is underfunded and the public remains unaware of the magnitude of this disease. The cure rate for most brain tumors is significantly lower than that for many other types of cancer.
We have a couple ideas to get this off the ground, and there's been a surprising number of people who want to do something with us, like Chad's colleagues volunteering a bake sale or to stuff envelopes!
So stay tuned because we want to share more of this idea with you soon!
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6 comments:
Megan,
Every day that I read you amaze me more! I admire your strength and determination. Thanks for keeping this blog up and moving!
GO KYRIE GO. (I love that!)
Jamie Tjaden
Megan and Chad,
I know people that have started non-profit organizations, and that are very experienced in grant writing. They would love to lend any advice needed. Just say the word.
Trish
I will be sending a card this weekend!
If you need help re: finding funding as you build your non-profit, let me know. I do it for a living :-). Also in terms of getting things set up, where you should start etc...feel free to contact me (ehenry03@gmail.com), I can give you some places to start.
Go Kyrie Go!
Erin
My husband works @ LoveBox (I have never personally met your family, but I want to thank you for sharing this blog), and when he told me about Kyrie, I could only imagine what you as a family must be going through (we have a 15 month old son). And then it brought back memories, 14 years ago, I lost an 8 year old cousin to cancer. It was so hard for me to understand and sometimes it still is, why would a child be taken away from us? I have read your blog, and am amazed with all the wonderful ideas you have, and thought I would throw a couple out that my family has going in honor of my cousin, whose name was Alexis. Once a year, there is a charity golf tournament, and a Texas Hold'em Poker tournament. All money raised goes to a Scholarship fund that has been established @ the church where her family attends. Each year several thousands of dollars are raised, and in turn seniors from the church are awarded money from the fund to assist them with paying for their college tuition. We also collect the tabs from pop cans and donate them to the Ronald McDonald House.
Reading your blog has made me want to do more and never take a day for granted.
Go Kyrie Go!
Angie Kryston
Hi Chad and Megan.
What a great idea with the organization, and alot of work that will remind you about that pretty little girl! I personally have fallen in love with the "Go Kyrie Go" logo that Megan posted recently. It is so beautiful and would look really good on a T-Shirt or a purse, or a diaper bag, a window cling or a little girls zip bag miniature treasures!!! Let me know when I can by one. Don't know if Megan designed it or not, but it wouldn't take much to get it digitized and you would be off and running! Walk, Run events are always fun and you could do one to include the family, let kids ride bikes or moms push baby strollers through, might deter the some serious runners, but could be a fundraising event with games and stuff for famlies.
I also have a good friend from college who is a nurse with the pediatric blood cancer clinic for Stanford medical center in California. She got her BSN at MU and while working there found her calling working in Pediatric Cancer. I can ask her if she knows of some national or local resources that might be of help to you.
Tell Jordan and Lacey, I send my prayers their way.
The power of prayer is amazing and I consider it a priviledge to offer my prayers for Kyrie and her family!
I can only imagine the wonderful things my momma is sharing with Kyrie now!
Peace,
ERIN ALLEN
Megan, this is so exciting to hear about..I am a 1000 miles away and have never met you in person but my husband and I have decided to order 50 coloring books (the most beautiful pink precious moments coloring books with the title, "Let Love Grow" and donate them to Devos Children's Hospital hem/onc ward. And I am working on getting custom stickers to put inside with...you guessed it, Go Kyrie, Go! In memory of...uhh, no. More like in continuation of...Some light is shining through the shadows of this heartache. I wish we lived closer my husband is an attorney and has formed several non-profits. In any case, I will keep you posted on our pay it forward. With love, motherof2
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