Advocacy

Why the Pediatric Cancer Dream Team Incorporates Patient Advocates into the Research Process

by St. Baldrick's Foundation
October 16, 2019

“I’m an accidental tourist in the childhood cancer world,” says Patrick Sullivan, who chairs the Patient Advocacy committee for the St. Baldrick’s Foundation — Stand Up 2 Cancer Pediatric Cancer Dream Team. “It’s not a place I’d ever thought I’d be in, until I heard that my son had rhabdomyosarcoma in 2007.”

Patrick and Finn in slide.
Patrick Sullivan and his son, Finn.

Patrick’s role is more than just tourist, though. When the Pediatric Cancer Dream Team was created, its goal was to push the envelope, to marry the emerging fields of genomics and immunotherapy to create targeted therapies for cancers. It was also important to the Dream Team to involve patient advocates, to inspire and work alongside the researchers, to maximize the Dream Team’s success. Along the way, each researcher was paired with a young investigator on the team, to help the advocates better understand the science and to help the young investigators better communicate their work to families and the lay public.

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Families

The Mom of a St. Baldrick’s Ambassador Tells Us Why There’s Need for Research to Help Pediatric Cancer Survivors

by Katrina Knott
September 6, 2019

Editor’s Note: As we commemorate Childhood Cancer Awareness Month, and launch the #DFYchildhoodCancers campaign, we’d like to introduce you to Katrina Knott, whose daughter, Arianna, is one of the five St. Baldrick’s “Ambassadors” for 2019. As you’ll read in her story, survivorship issues in pediatric cancer need attention – and funding – for those like Arianna, whose challenges are many.

Arianna during treatment

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Families

What Mother’s Day is Like for Moms of Kids with Cancer

by St. Baldrick's Foundation
May 10, 2019

Ellie is just like every other Mom in that she juggles all sorts of things, from kids’ schedules to work/life balance. Except she does it all while caring for a child with cancer. On her own blog, she tells stories of her family’s day-to-day with style, grace, and compassion.

Today, as we celebrate Mother’s Day, and especially the Moms who have the added complexity of pediatric cancer, we’ve decided to let her tell a Mother’s Day story on the St. Baldrick’s blog.

Ellie and her child, who has pediatric cancer, take a selfie in the hospital.

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Childhood Cancer

Meet Georgia, St. Baldrick’s Newest League of Legendary Heroes Champion

by St. Baldrick's Foundation
January 25, 2019

The League of Legendary Heroes is an order of dedicated volunteers who’ve participated in St. Baldrick’s Foundation events for three or more years. Each year, St. Baldrick’s names a League Champion to lead and inspire this group to raise money for lifesaving childhood cancer research.

Georgia Moore, our newest League Champion of the League of Legendary Heroes, just celebrated her 19th birthday on Dec. 30. The following day, New Year’s Eve, marked nine years since Georgia was diagnosed with acute lymphoblastic leukemia (ALL).

Photograph of 2019 League Champion Georgia Moore with her family at Tufts University.

Our 2019 League Champion, Georgia Moore (third from left), appears with her family at Tufts University.

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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

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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