Read on for updates on the State of the Union, the President’s budget proposal, and events during Rare Disease Week on Capitol Hill.
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.
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!
Back in April, Ambassador Zach was finally healthy enough after his bone marrow transplant to go out in public. What did he decide to do after that momentous milestone? He joined the hundreds of advocates speaking up for kids’ cancer research on Capitol Hill during Childhood Cancer Action Days. Here’s his recap of that trip and the big moments that have come since …
Ambassador Zach poses for a photo in front of the United States Capitol building and its famous dome during Childhood Cancer Action Days in April.
I received a bone marrow transplant over a year ago, and I was so glad that I was healthy enough to speak on Capitol Hill this past April as a St. Baldrick’s ambassador. As an ambassador, I am a face and a voice for childhood cancer, and while in Washington, D.C., my family and I represented thousands of children and families who are affected by childhood cancer. I was lucky enough to share my story and talk about the importance of funding childhood cancer research through the STAR (the Survivorship, Treatment, Access and Research) Act, the most comprehensive childhood cancer legislation ever taken up by Congress. With the recent passage of the STAR Act, we have come so far, but we still have so far to go.
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.
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.
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.
2017 was a big year, full of breakthroughs, incredible stories and some pretty amazing achievements in the childhood cancer world. Join us as we reflect on St. Baldrick’s top 10 highlights of the past year — and make sure you give yourself a pat on the back, because much of this was possible because of YOU!
Are you ready to take a trip down memory lane? Here we go …
1) Passage of the RACE Act
Honored Kid Amanda was just a year old when she was diagnosed with neuroblastoma and only a toddler when she died. This is why her dad, Ron Rozman, advocates for kids’ cancer research — so other parents and kids don’t ever have to endure the cruelties of childhood cancer. Read on for more about his exuberant girl, her tough fight and his advice on how you can become an advocate, no matter where you live.
Ron and Michelle Rozman cuddle and laugh with their daughter Amanda during a day at the park.
She loved to dance. Three-year-old Amanda twirling around and exclaiming, “Whee! Whee!” in sheer delight is a precious memory for Ron and Michelle Rozman.
It’s one of many favorite remembrances of their then-only child who was diagnosed with stage 4 high-risk neuroblastoma when she was 16 months old.
It is these memories that now fuel Ron’s dedicated efforts as an advocate for pediatric cancer research funding.
We have big news. Yesterday, the the FDA Reauthorization Act passed the Senate which includes critical components of the Research to Accelerate Cures and Equity (RACE) for Children Act. Read on for more about the RACE Act and what this news means for Rob Lenfestey, the dad to Honored Kid Scott, and for families everywhere.
Honored Kid Scott ‘speaks up’ for kids’ cancer research on Capitol Hill during this year’s Childhood Cancer Action Days.
When our son, Scott, was diagnosed with acute lymphoblastic leukemia at age 3, my mind was swimming with questions about his treatment options. During the last 20 years, the FDA has approved approximately 190 new cancer therapies for adults; only three new treatments have been approved specifically for treating kids with cancer. Our hopes hinged on the existing treatments available, and the prospect of drugs that may be waiting in the pipeline if conventional treatments weren’t effective at killing his leukemia.
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