A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘Ellyn Miller’

“Children are the Fruit of all Humanity”

Curefest 2014 483“Every child belongs to mankind’s family

Children are the fruit of all humanity

Let them feel the love of all the human race

Touch them with the warmth, the strength of that embrace.”

      ~Chuck Mangione, Children of Sanchez

When I first met my husband, Melinda’s dad, he melted my heart by playing Children of Sanchez, by Chuck Mangione, on the piano. I loved this song from the first time he played it, and I have recently rediscovered it. It brings back to me all the familiar feelings from long ago– before I was married and before our three children were born. At the same time, this beautiful song has now taken on new meanings as life experiences have piled on over the years.

My love for children has always been strong, but having the experience of being engulfed into the world of childhood cancer has only made that love stronger and more powerful. My contact with children fighting cancer and families and caregivers over the past few years has impacted my life in ways I will forever be grateful for. I credit them with teaching me to look at and value the Ends of the Spectrum of Life. At one end is the ultra-meaningful and at the other is all-out-silliness, whose only meaning is pure joy. What lies in the middle is the mediocre of life and what lies at each end is what life is all about.

For those leaders in the childhood cancer community who take on the challenge of pushing forward for awareness, research and cures for our “fruit of humanity,” I thank you. If we don’t take care of our children, our “fruit,” we are nothing but empty and barren.

Every child really does belong to “mankind’s family.” For too long, our society and our government have turned away from viewing the gripping and horrid realities of childhood cancer. Cancer is the number one disease killing children in our country. Seven children die each day. Two new drugs have been developed specifically to treat childhood cancer in the past two decades. Two.

Children need progress. Time is not a luxury in the world of children fighting cancer.

With a grateful heart, I share this news of promising progress from Mark & Ellyn Miller of Smashing Walnuts Foundation about the Gabriella Miller Kids First Research Act:

https://www.facebook.com/smashingwalnuts
GREAT NEWS!!
THIS JUST IN…

Our Sweet GG did it! Thirteen and a half months after Gabriella died she moved our Congress to come together for our children battling disease. Congress “stopped talking and started doing”!

The Gabriella Miller Kids First Research Act has made it into the government funding Bill that the House and the Senate will vote on THIS week!! The section of the Bill that includes the GMKFRA is 177 pages long. The link below includes a summary of each section of the legislation. Not only is the GMKFRA included in the legislation but it is prominently featured in the three page summary attached below!

Thanks to so many individuals and organizations, working together towards a common goal, we succeeded the first time out the gate! Thank you and congratulations! We did it! We have made a tremendous difference in the world of childhood disease research!”

#GabriellaMillerKidsFirstResearchAct #GabriellaMiller #SmashingWalnuts#TalkIsBullshit #ItsNotOk
appropriations.house.gov

$12.6 million!

Curefest 2014 180

Let’s encourage our elected leaders to continue to sharpen their focus on childhood cancer. Thank them for their votes this week to include GMKFRA in the FY 2015 Omnibus.

Thanks to Four Square Clobber Cancer for letter assistance…

http://4sqclobberscancer.com/2013/02/24/dear-congressman/

“Give me love and understanding, I will thrive

As my children grow my dreams come alive

Those who hear the cries of children, God will bless

I will always hear the Children of Sanchez.”

   ~Chuck Mangione

 Guest Blogger: Lee Marchiano

 

 

 

Curefest DC 2014 on the National Mall– Photo Memories

Curefest 2014 422After two days filled with inspiration  in Washington D.C., a third followed. CurefestDC 2014 began at 9 am on Sunday, September 21st on the National Mall. My decision not to brave the “waters” of the dreaded metro by myself on this morning proved to be a good one. I gobbled some breakfast in a taxi on the way and arrived with a full belly and a happy heart.

Festive is the word I would use to describe my first impression. My second impression was thankfulness for all the people who came, all the people who worked to create the event, and all the volunteers who donated their time to put this enormous event together. 

The setting for CurefestDC on the National Mall made everything that was there and everything that happened a notch or two more epic. Backdrops of the Capitol Building and the Washington Monument have a way of doing that. I understand there were more than 75 foundations present under the white pop-ups lining the mall. 

This was a day for the kids. I loved seeing kids scurrying around collecting as many wristbands as they possibly could. They hugged each other, sat on each other’s laps, walked, danced, and some even spoke. Survivors and siblings were honored and received special gifts.Curefest 2014 441

Curefest 2014 447

Curefest 2014 483

Curefest 2014 509

One of the most fun and heart-warming times of this day was a butterfly release. Families were given boxes to open and free the butterflies inside. The look of wonder, awe, and joy on the kids’ faces was alone worth the trip to D.C. Before opening the boxes, Ellyn Miller told the crowd, “These butterflies are for all of our kids.” With that, they gave their boxes a kiss, then opened them up to reveal the life within.

Curefest 2014 539

 

 Abby Miller sang the National Anthem while Delaney Clements held our nation’s flag. The walk began…

Curefest 2014 560

Curefest 2014 563

Curefest 2014 585

Curefest 2014 586

The camaraderie present was something so strong that it seemed possible to physically touch it. The gorgeous somber and reflective tone of the night before at the White House transformed into a tone of courage, love and purpose– even joy. 

Curefest 2014 636

Curefest 2014 668

Dancers danced in honor and in memory of children fighting cancer. Here, dancers hug Delaney Clements after their performance.

Curefest 2014 694

Joel Waldman, from Fox 5 NY, received an award of recognition and thanks for his outstanding work to bring awareness to childhood cancer.

Curefest 2014 654

Gabriella Miller’s mom, Ellyn and Erin Griffin’s mom, Amanda, had their heads shaved at the event to bring more awareness to childhood cancer.

Curefest 2014 731

Billy Sherwood, crazy-cute and courageous survivor, helping at his mom’s booth for Arms Wide Open Childhood Cancer Foundation.

Curefest 2014 782

I remember– I will never forget– how much Melinda hurt inside when she was in the middle of her cancer battle and she was not able to dance. This moment at Curefest brought back memories of pain, and at the same time it crushed those memories with the victory I witnessed when Gabi Shull took the stage and danced. Oh my gosh! Beautiful Gabi! 

Curefest 2014 463

Thank you to Alvin Jones, Master of Ceremonies with a huge heart for the kids.

Curefest 2014 788

The man who is turning the world gold #WorldGoGold, Tony Stoddard (Cole’s Dad) stands with Amanda Griffin (Erin’s Mom).

Like I mentioned at the beginning of this post, there is something epic about the setting of CurefestDC. Do you notice what is directly between Tony and Amanda in the photo above? Hello, elected representatives, childhood cancer activists are more organized and more determined than ever before to have you listen to our One Voice to create change for childhood cancer. We need cures right now for all kids.

Like ten year-old Gabriella Miller so eloquently stated, “Talk is bullshit, we need action.” 

http://www.youtube.com/watch?v=QaoqnILa0l4

It’s not okay to sit back, flap our gums and do nothing. CurefestDC gave all of us an opportunity to do something. I think CurefestDC inspired everyone who was present. There is no greater cause than the health of our children. There is nothing like spending the weekend with people who know this is true. 

CurefestDC was one huge blast of hope and inspiration. 

Don’t worry, Gabriella, we’re going to do a LOT more than talk!

Curefest 2014 703

Guest Blogger: Lee Marchiano

 

 

 

 

Tag Cloud