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 Alison Sutton, 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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Advocacy

St. Baldrick’s Advocate of the Month: The Lautieri Family

by Erinn Jessop, St. Baldrick's Foundation
May 31, 2017

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 Team Grayson hat

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.

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Advocacy

5 Ways to Speak Up For Kids’ Cancer Research From Home

by Erinn Jessop, St. Baldrick's Foundation
April 26, 2017

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!

Step Up image

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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Advocacy

St. Baldrick’s Advocate of the Month: Kelly Forebaugh

by Erinn Jessop, St. Baldrick's Foundation
March 29, 2017

The March Advocate of the month is Kelly Forebaugh, a hero for kids with cancer who wears many hats — she’s the Director of Hero Funds and Memorials at St. Baldrick’s, mom to a cancer survivor, a staunch advocate for children’s cancer research, a shavee and a regular at Childhood Cancer Action Days on Capitol Hill. What inspires her to do all this? Read on to find out.

Kelly getting her head shaved by her son

Kelly gets her head shaved by her son, Jackson, during their family’s 2016 St. Baldrick’s head-shaving event.

In 2005, Kelly Forebaugh’s son Jackson was diagnosed with a rare and aggressive childhood cancer in his kidneys, called a rhabdoid tumor of the kidney. He was just 15 months old.

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Advocacy

From the Boro to the Hill: St. Baldrick’s Shavees Advocate in D.C.

by Lauren Feller, St. Baldrick's Foundation
March 29, 2017

Six St. Baldrick’s shavees from Tennessee have been volunteering for years to raise money for childhood cancer research — but their dedication to the cause doesn’t end there. Read on to learn about each of these incredible individuals and how they went from head-shaving in Murfreesboro to advocating on Capitol Hill.

bald in the boro outside the capitol

The ‘Bald in the Boro’ group (from left to right): Marshall Campbell, Isaac Harrison, Jeremy Harrison, Logan Simmons, Chris Simmons, and Joyce Tibbs.

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Advocacy

Now Is the Time for MORE Investment in Research, Not Less

by Jeffrey M. Lipton, M.D., Ph.D.
March 23, 2017

The Administration’s FY18 Budget proposes a $5.8 billion cut to the National Institutes of Health — a move that St. Baldrick’s researcher Dr. Jeffrey Lipton finds concerning for the future of childhood cancer research. Read on for more about the proposed budget, Dr. Lipton’s fears and what YOU can do about it.

Cheyenne strikes a strong pose

As a physician scientist who has treated children with cancer for decades, I am deeply concerned about the President’s proposed federal budget for the coming year.

I know this budget will be carefully reviewed by many, and that Congress holds the purse strings. That’s why I’m counting on our champions in the House and Senate to stand up for our children.

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Advocacy

St. Baldrick’s Advocate of the Month: Wendy Baskins

by Erinn Jessop, St. Baldrick's Foundation
February 22, 2017

Need some monthly inspiration? We’ve got it! Each month we will be highlighting one of our heroes right here on the blog. Without further ado, say hello to our first Advocate of the Month: Wendy Baskins. Wendy never backs down from a fight — just like her son, Stephen, who battled cancer three times. Read on for more about Stephen, what he taught her, and why Wendy fights for families facing childhood cancer.

Wendy shaves

Wendy wears a big grin as she goes bald for childhood cancer research during the 46 Mommas Shave for the Brave event. Courtesy of Cassell Photography

When the going gets tough, the tough get going. That is one of the many things Wendy Baskins learned from her son, Stephen.

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Advocacy

A ‘Meeting of the Minds’ to Look to the Future for Kids With Cancer

by Becky C. Weaver, Chief Mission Officer, St. Baldrick's Foundation
November 7, 2016

What happens when a group of experts come together to discuss developments in childhood cancer research and advocacy? Some inspiring conversations about new data, drugs and therapies, important childhood cancer legislation, and more — all to make sure we’re making the best investments with YOUR donations. Get the scoop on our 2016 Research and Advocacy Priorities Summit below.

St. Baldrick's 2016 Research and Advocacy Priorities Summit

Every couple of years, St. Baldrick’s brings together our experts to take stock of what we’re doing now, and to look to the future of childhood cancer research. We examine what we are doing well, what we can do better, and what we need to do to help kids with cancer not only survive, but thrive.

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Advocacy

From Cancer Mom to Advocate: A Journey of Passion

by Nancy Lenfestey
November 4, 2016

Nancy knows advocating for childhood cancer research is more than a job. For her, it’s a passion fueled by her son Scott’s leukemia diagnosis and the shocking shortage of kid-specific treatment options available to him — a topic she helped tackle in her recent work on a comprehensive childhood cancer landscape report. Read about Nancy’s journey from childhood cancer mom to advocate, and her take on the report, below.

Nancy and son

When my son, Scott, was diagnosed with acute lymphoblastic leukemia at the age of 3, I wavered for a good three months between wanting to know everything about childhood cancer and not wanting read a single thing.

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