Advocacy

St. Baldrick’s Advocacy Highlights of 2018

by St. Baldrick's Foundation
December 14, 2018

The St. Baldrick’s Speak Up for Kids’ Cancer advocates played an instrumental role in facilitating monumental legislative achievements for kids with cancer in 2018.

Collage of images showing St. Baldrick's advocacy efforts in 2018.

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Childhood Cancer

How Your Donations Helped Zach Beat Childhood Cancer

by St. Baldrick's Foundation
December 11, 2018

Most six-year-old boys spend their time thinking about toys, candy and getting to school on time. Few need to worry about their health at such a young age, and even fewer face the uncertain future following a cancer diagnosis.

Fighting cancer was Zach’s world when he was six. In 2007, he was diagnosed with acute lymphoblastic leukemia, or ALL. Over the next four years, Zach underwent intense and physically demanding treatments like chemotherapy and radiation.

Zach before and after his immunotherapy clinical trial.

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Childhood Cancer

Saving Money on Black Friday? Pass it on this Giving Tuesday.

by St. Baldrick's Foundation
November 20, 2018

Last year, an estimated 174 million Americans – or more than half the total US population – shopped online or in stores between Thanksgiving and Cyber Monday. In only 5 days, online sales totaled nearly $15 billion. It’s safe to say, then, that many Americans saved money pursuing big bargains that weekend.

If you’re saving money during this year’s Black Friday or Cyber Monday events, consider passing it on this Giving Tuesday, Nov. 27. You can do that right now by visiting our dedicated Giving Tuesday donation page.

Giving Tuesday is the real deal this Black Friday

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Childhood Cancer

When Research Offers Hope, Parents Continue to Advance the Mission

by Carlos Sandi, Dream Team Patient Advocate
October 23, 2018

I was recently invited to serve as a patient family advocate for the St. Baldrick’s / Stand Up to Cancer Pediatric Cancer Dream Team representing the National Cancer Institute. If you’re not familiar with the Dream Team and what they’re doing, it’s worth taking a few minutes to read up on the project.

In short, it’s a multi-institutional effort to accelerate cures for childhood cancer by sharing the skill, knowledge and unique resources of 8 top-notch research institutions.

Carlos Sandi with his son, Phineas

Carlos Sandi with his son, Honored Kid and Ambassador Phineas.

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Families

One Sibling Was Diagnosed with a Brain Tumor and Then the Unthinkable Happened

by Erinn Jessop
October 9, 2018
Kalea

Kalea and Noah snuggle in one hospital bed during treatment.

From waking up in the morning to getting tucked in at night, siblings Noah and Kalea were practically inseparable.

They’d eat their breakfast together – whatever 6-year-old Kalea had, 4-year-old Noah wanted too – and brush their teeth together. The two kids would get so immersed in playing together, and so quiet, that their parents, Duncan and Nohea, would get nervous and go check on them. Inevitably, the adults would interrupt some elaborate imaginary adventure and the kids would shoo them away.

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Families

The Truth About Parenting a Cancer Sibling

by Amy Dyess
October 2, 2018

We talk a lot about how childhood cancer affects the family. But what about the siblings, specifically? 2016 Ambassador Cheyenne’s mom opens up about how her 5-year-old son, Tristen, copes with his big sister’s childhood cancer journey, and how she and her husband balance their children’s needs.

Cheyenne and Tristen smiling

It’s September. This is a big month for those of us in the childhood cancer community.

If you know anyone impacted by childhood cancer, I am sure your Facebook feed is blowing up with heart wrenching facts about how underfunded the research is and how rare childhood cancer ISN’T.

One thing that tends to be forgotten is how childhood cancer impacts the rest of the family. Most specifically, the siblings.

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Families

Our Family is Lucky Because My Son Had Options

by Jeffrey Bernstein
September 17, 2018
Micah dances in the hospital

Honored Kid Micah shows off his dance moves as his dad, Jeff, looks on.

I’m sitting in the waiting area of a hospital 100 miles from home to get the results of my 7-year-old son’s latest MRI scan. Strange to think of myself as one of the lucky ones, but in this club that no one wants to join, I am lucky. My son Micah is now celebrating four years with no evidence of disease, after being diagnosed with an aggressive form of cancer when he was just a toddler. But that good fortune didn’t come out of nowhere. We are lucky because Micah had treatment options – options made possible by St. Baldrick’s Foundation donors like you. Now I need your help to make sure that every child with cancer has as many options as my son Micah had.

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Families

For Emma Sophia and Her Family, Childhood Cancer Research is Hope [VIDEO]

by Ashley Roque
September 7, 2018

Before Honored Kid Emma Sophia was 2 years old, she was in a fight for survival after being diagnosed with leukemia. Now 7 years old and two years past treatment, this amazing kid is sharing her story to inspire others to support childhood cancer research — like the lifesaving research funded by the St. Baldrick’s Foundation and Stand Up to Cancer.

A collage of Emma Sophia in treatment and in remission

(Left) Honored Kid Emma Sophia in treatment as a toddler. (Right) Emma Sophia is now 7 years old, in remission and aspires to be an artist, a veterinarian and a chef.

Emma Sophia was barely 20 months old when she started limping at a family party. While the rest of her friends were running around and chasing one another, this little girl could hardly walk. All she wanted was for her daddy to hold her.

“She was so young and so small,” Emma Sophia’s dad, Joey, remembered. “She couldn’t tell me what was wrong.”

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Families

From Sushi to Superheroes, This Cancer-Free Kid Had the Best Answers to Our Questions [VIDEO]

by Erinn Jessop, St. Baldrick's Foundation
September 4, 2018

It’s officially Childhood Cancer Awareness Month and we are kicking it off by getting to know Honored Kid Micah! Bright, curious and quite the dancer, Micah has been fighting neuroblastoma since he was 15 months old. Thanks to research, he’s now cancer free! So, we asked him our burning questions, like how does it feel to be a cancer-free kid? And what song is he dancing to these days? This is what Micah said…

Micah in the hospital and cancer free

(Left) Micah goofs off in the hospital during treatment for neuroblastoma in 2015. (Right) Micah plays on the monkey bars — something he missed doing when he was stuck in the hospital during treatment. After multiple relapses and undergoing many different treatments and experimental clinical trials, Micah is currently cancer free.

1) If you could have a superpower, what would it be and why? The ability to turn into any dragon because I love the “How to Train Your Dragon books, movies, and TV series.

2) What ’s your go-to song to sing and dance to? “This Is Me” from “The Greatest Showman” 

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Families

What Does it Take to Beat Cancer, Fly on a Zip Line and Go to School Without Sight? Bravery Every Day

by Katie Vescelus
August 31, 2018

Honored Kid Matthias was diagnosed with retinoblastoma when he was just 3 months old, leaving him blind. But that hasn’t stopped him. Today, Matthias is a childhood cancer survivor and an independent 10-year-old who is learning to navigate the world without sight. As his mom, Katie, shares, he’s one brave kid.

Matthias

Matthias was just a baby when doctors had to remove his eyes to save his life. Since then, he’s learned to read braille and use a cane to help him get around. Photo by Jen Sherrick Photography

When Matthias lost his eyes to bilateral retinoblastoma nine years ago, we never could have imagined how happy and full his life would be. He is a hiker, traveler, and adventurer who has visited 23 states and two countries. He loves sports, especially hockey. He is obsessed with learning about weather, and he is a good student. He is a loyal friend and a fierce advocate for pediatric cancer research and disability rights. He has shaved his head five times for St. Baldrick’s, traveled to Washington D.C. twice to talk to legislators about the STAR Act and is a guest speaker for a disability awareness organization.

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