Speak Up for Kids’ Cancer: January 2020
We hope you are having a great start to the new year! Read on for legislative updates, upcoming meetings and events, and ways to get more involved as we hit the ground running in 2020.
St. Baldrick’s Foundation Applauds Increased Funding for Childhood Cancer Research
(December 20, 2019) – Washington, DC – St. Baldrick’s Foundation, the nation’s largest charitable funder of childhood cancer research grants, released the following statement from Kathleen Ruddy, Chief Executive Officer, St. Baldrick’s Foundation, regarding the approval of increased funding for childhood cancer research and support for the implementation of the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act in the final Fiscal 2020 spending package.
Happy Anniversary, Childhood Cancer STAR Act! Signed into Law One Year Ago Today
The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act – the most comprehensive childhood cancer bill in history – was signed into law one year ago today!
2013 St. Baldrick’s Ambassador Matthias advocating on Capitol Hill
The Mommas Mean Business – And Ten Years Later, They’re Still Raising Money for Pediatric Cancer Research
Childhood Cancer Action Days 2019: Scott and Nancy Head to Washington
The Alliance for Childhood Cancer Action Days in Washington, D.C., is an opportunity for members of the childhood cancer community – from kids and their families to health care professionals and volunteers – to advocate for childhood cancer issues before Congress.
St. Baldrick’s Honored Kid, Scott, a 10-year-old whose cancer is in remission, attended Action Days with his mom Nancy and has provided us with the following report on his experiences in Washington.
Scott (left) attended Childhood Cancer Action Days in Washington, D.C., in late March.
The Childhood Cancer STAR Act Passes and is Signed Into Law
After years of advocating on Capitol Hill, the Childhood Cancer STAR Act passed and was signed into law! See how the STAR Act will help kids with cancer and childhood cancer survivors live long, healthy lives.
What is the childhood cancer STAR Act?
The STAR Act stands for the Survivorship, Treatment, Access and Research (STAR) Act. It is the most comprehensive childhood cancer legislation ever taken up by Congress.
Pass the STAR Act Now, Because My Daughter Deserved Better
The STAR Act — the most comprehensive childhood cancer bill ever introduced on Capitol Hill — was just passed by the Senate and now heads to the House, backed by the support of Members of Congress, families, survivors and advocates like YOU. Why is this bill so important? Rachael Kittleson, the mom to a teen who had a pediatric brain tumor, will tell you …
Rachael (middle) smiles with Kelsey (right) and her little sister, Avery.
There is nothing in life that prepares you for the words, “Your daughter has a large tumor on the left side of her brain.” There is nothing in life that prepares you for telling your husband devastating news about his girl. And there is certainly nothing in life that prepares you for how to keep your teenage daughter calm as you say, “You have to go to the hospital, but you are going to be fine.”
I think back on watching my daughter Kelsey perform on stage or playing on the soccer and lacrosse fields. I think of the cancer breaking into her brain silently and lying in wait, like a burglar.
Kelsey was an energetic teenager and an accomplished athlete, playing both soccer and lacrosse.
For me, three years ago was such a time of pride and excitement as I watched our oldest daughter start to come into her own. She was an honors student, athlete, lead in the school musical, tutor and musician. While she was a normal teenage girl excited about things like her dress and date for her 8th grade dance, there was something else going on with Kelsey. The cancer was barely perceptible and easily dismissed, but it would eventually, most cruelly, take everything from her a piece at a time.
As Kelsey’s spring schedule was in full swing, the tumor started to make itself known in innocuous ways – ways I easily brushed aside as a mother. I had no idea this was the beginning and the beast would be in full control in just a couple of months. As Kelsey’s symptoms progressed, an MRI was ordered for August 27, 2015. That day would change our lives forever.
Pass the STAR Act, Because Kids With Cancer Don’t Have Time to Wait
My kids are alive. My husband is alive. We are here and we are together. That is what I tell myself when the anger and bitterness take hold. My husband served the United States Army for over 22 years. During that time, two of our children, Collin and Patrick, were diagnosed with cancer.
Patrick and Collin are brothers and were both diagnosed with childhood cancer. Patrick, now 13 years old, was diagnosed with stage II intermediate risk hepatoblastoma, a rare cancer of the liver, in 2010. Collin, now 11 years old, was diagnosed with acute lymphoblastic leukemia (ALL) when he was 2 years old.
While my husband fought on foreign soil, I served our nation as a military spouse and tackled childhood cancer with our kids in North Carolina. As a family, we sacrificed so much for this nation and yet we ask so little in return – just a chance for a brighter future. The Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act can get us there.
St. Baldrick’s Advocate of the Month: Kelly Forebaugh
The March Advocate of the month is Kelly Forebaugh, a hero for kids with cancer who wears many hats — she’s the Director of Hero Funds and Memorials at St. Baldrick’s, mom to a cancer survivor, a staunch advocate for children’s cancer research, a shavee and a regular at Childhood Cancer Action Days on Capitol Hill. What inspires her to do all this? Read on to find out.
Kelly gets her head shaved by her son, Jackson, during their family’s 2016 St. Baldrick’s head-shaving event.
In 2005, Kelly Forebaugh’s son Jackson was diagnosed with a rare and aggressive childhood cancer in his kidneys, called a rhabdoid tumor of the kidney. He was just 15 months old.
From the Boro to the Hill: St. Baldrick’s Shavees Advocate in D.C.
Six St. Baldrick’s shavees from Tennessee have been volunteering for years to raise money for childhood cancer research — but their dedication to the cause doesn’t end there. Read on to learn about each of these incredible individuals and how they went from head-shaving in Murfreesboro to advocating on Capitol Hill.
The ‘Bald in the Boro’ group (from left to right): Marshall Campbell, Isaac Harrison, Jeremy Harrison, Logan Simmons, Chris Simmons, and Joyce Tibbs.
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