This two-day event in Washington, D.C. brought advocates to Capitol Hill to share their stories and thank their representatives for:
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.
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.
When Kristine’s daughter McKenna was diagnosed with a rare pediatric brain tumor that no child has ever survived, she learned there was no known cure because of a lack of funding for research. You can help — get involved.
McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.
Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.
It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.
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.
This July, St. Baldrick’s Advocate of the Month is Diana Toohey, the mom of Honored Kid Ethan. From his mom’s advocacy on Capitol Hill to the $325,000 raised in Ethan’s honor by his local St. Baldrick’s events, his story has made a big impact. Read on to learn why Ethan is such a huge inspiration to so many people, including his mom, and why she speaks up for kids’ cancer research in his honor.
Ethan smiles while wearing his favorite green shirt, which was emblazoned with the words, “Team 2E” in honor of Ethan and his family. Kids at his high school wore the shirts at a fundraiser in Ethan’s honor on the day he died.
Diana Toohey travels to Washington, D.C., for Childhood Cancer Action Days, she calls and emails her legislators, and speaks up for kids’ cancer research whenever she can. She does all of this so kids with cancer get the treatments and cures they need to survive.
But there’s another reason she makes those phone calls and knocks on those doors.
She loves saying her son’s name — Ethan.
This two-day event in Washington, D.C. brought advocates to Capitol Hill to share their stories and ask their representatives to:
- Co-Sponsor the STAR Act — the most comprehensive childhood cancer bill ever introduced to Congress
- Support the inclusion of the RACE Act in the FDA User Fee Bill
- Increase federal funding for cancer research
Here is a little behind-the-scenes look at our day on the Hill…
Childhood cancer doesn’t just affect the child who’s diagnosed, it affects the entire family. May’s Advocate of the Month — the Lautieri Family — is fighting back. Read on for more about the family’s cancer journey with Honored Kid Grayson and why they continue to speak up and give back.
Grayson wears a hat emblazoned with his team name.
When Honored Kid Grayson Lautieri finished treatment in April, he was done with chemo, but he and his family weren’t done fighting against childhood cancer.
Do you care about children’s cancer? Do you want all kids to live long, healthy lives? Do you want more funding for more lifesaving research, so kids with cancer can get back to being kids? (Is that a big YES we heard?) Ta da — you’re an advocate!
Yep, it’s that simple. And now it’s time to get down to business, advocate. At this critical moment, when federal research funding is being threatened, it’s time to ACT. It’s time to speak up for kids with cancer by supporting the STAR Act, the most comprehensive childhood cancer bill to hit the Hill.
And guess what? You don’t have to stalk the halls of Congress or shake hands and kiss babies — you can speak up for kids’ cancer wherever you are.
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