Advocacy

Teen Saved by Science Speaks Up for Kids’ Cancer Research

by St. Baldrick's Foundation
July 3, 2018

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 on Capitol Hill

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.

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Advocacy

The Childhood Cancer STAR Act Passes and is Signed Into Law

by St. Baldrick's Foundation
June 5, 2018

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.

STAR Act logo

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.

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Advocacy

Action Days 2018: Families Speak Up For Kids With Cancer on Capitol Hill

by St. Baldrick's Foundation
May 10, 2018

More than 200 childhood cancer advocates, including St. Baldrick’s families and Honored Kids, joined the Alliance for Childhood Cancer’s 7th Annual Childhood Cancer Action Days on April 23-24.

Group Photo

This two-day event in Washington, D.C. brought advocates to Capitol Hill to share their stories and thank their representatives for:

  • Passing the STAR Act unanimously in the Senate — the most comprehensive childhood cancer bill ever introduced to Congress
  • Approving a $3 billion increase for medical research at the NIH
  • Approving the RACE Act to encourage the development of new drugs to treat childhood cancer

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Advocacy

Pass the STAR Act Now, Because My Daughter Deserved Better

by St. Baldrick's Foundation
March 27, 2018

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 …

Avery, Rachael and Kelsey

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 in her soccer uniform

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.

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Advocacy

Pass the STAR Act, Because Kids With Cancer Don’t Have Time to Wait

by St. Baldrick's Foundation
February 6, 2018

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 together

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.

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Advocacy

St. Baldrick’s Advocate of the Month: Ron Rozman

by St. Baldrick's Foundation
September 27, 2017

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 with their daughter Amanda

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.

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Advocacy

What I Learned From My Daughter’s DIPG Diagnosis

by St. Baldrick's Foundation
September 21, 2017

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 Claire

McKenna was diagnosed with DIPG, a deadly brain tumor, when she was 7.

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan.

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.

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Advocacy

The RACE Act Passed – What This Means to Our Family

by St. Baldrick's Foundation
August 4, 2017

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.

Scott shouts out on Capitol Hill

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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Advocacy

St. Baldrick’s Advocate of the Month: Diana Toohey

by Erinn Jessop, St. Baldrick's Foundation
July 27, 2017

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 in his favorite green shirt

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.

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Advocacy

Action Days 2017: Families Speak Up For Kids With Cancer

by St. Baldrick's Foundation
May 31, 2017

In early May, more than 200 childhood cancer advocates, including St. Baldrick’s families and Honored Kids, joined the Alliance for Childhood Cancer’s 6th Annual Childhood Cancer Action Days.

Action Days

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…

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