Advocacy

Tell Congress to Support the New Palliative Care Bill

by Danielle Leach, Director of Government Relations and Advocacy, St. Baldrick's Foundation
June 22, 2016

Today, Danielle Leach, our Director of Government Relations and Advocacy, is on the Hill to advocate for a new bill that will help kids with cancer get the care they need. She explains what the PCHETA Bill means for kids with cancer and how you can take action right from home.

Danielle holds a PCHETA sign

Danielle stands in Washington, D.C., advocating for the PCHETA Bill.

There is nothing worse for a parent than to see their child in pain.

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Advocacy

‘Imagine What It’s Like’: Carlos Takes His Story to Capitol Hill

by Carlos Sandi
May 17, 2016

Yesterday, Ambassador Phineas’ dad, Carlos, joined more than 200 childhood cancer advocates on Capitol Hill to drum up support in Washington for kids with cancer. He opened up about what it’s like to have two children diagnosed with cancer, how research saved his son’s life, and why he won’t stop telling his family’s story. Read his powerful speech below.

Carlos and Phineas Sandi

Carlos with his son, Phineas. Phineas was diagnosed with cancer when he was 4, six years after his sister Althea died of childhood cancer.

I live in Chapel Hill, North Carolina, but like most of my neighbors, I’m not actually from North Carolina. Chapel Hill is a college town where new people come and go every year.

Whenever my wife and I meet people for the first time, one of the first questions we get asked is, “So, how did you end up in Chapel Hill?”

When I hear that question, I always freeze for a second because I have to decide carefully how I want to answer.

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Advocacy

Tell Congress ‘Step Up: Support the Childhood Cancer STAR Act’

by St. Baldrick's Foundation
May 16, 2016

A coordinated community effort is underway to storm Congress — on foot and online. Childhood cancer organizations throughout the country are joining together to send Congress a message:

Step Up: Support the Childhood Cancer STAR Act
There are many ways for you to help:

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Advocacy

A Seat at the Table: Pediatric Cancer and the Moonshot Panel

by Danielle Leach, Director of Government Relations and Advocacy, St. Baldrick's Foundation
April 5, 2016

Yesterday, a panel of cancer experts were named to Vice President Joe Biden’s “moonshot” initiative to cure cancer. Read what Danielle Leach, our Director of Government Relations and Advocacy, has to say about this step forward for kids with cancer.

Mason Leach and his brother

Danielle’s oldest sons, Mateo (left) and Mason. Mason was diagnosed with a brain tumor when he was 3.

For most families, the dinner table is a safe place. But for me, it’s a constant reminder that my son Mason is not there.

Dinner was always a time where our family shared laughs, ideas and dreams, and our son Mason was often the loudest at the table. He yearned to be heard among the lively bunch that is our family.

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Advocacy

Our International Footprint: Helping Kids With Cancer Around The World

by Becky C. Weaver, Chief Mission Officer, St. Baldrick's Foundation
February 15, 2016

Today is International Childhood Cancer Day. We believe all kids deserve to be cancer free, no matter where they are in the world. See how we’re helping kids with cancer globally.

international map

Every three minutes another child is diagnosed with cancer. Worldwide, more than 175,000 children are diagnosed each year. But these statistics don’t tell the whole story.

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Advocacy

The ‘Moonshot’ to Cure Cancer: Keeping Kids in the Race

by Kathleen Ruddy, CEO, St. Baldrick's Foundation
January 15, 2016

President Obama recently announced a new national effort to conquer cancer. See how St. Baldrick’s is already at work and how you can help.

Cheyenne smiling two thumbs up
In Tuesday’s State of the Union address, President Obama announced a “moonshot” to cure cancer: a new national effort to conquer cancer once and for all.

We fully support this effort, and together, I believe we have the passion, creativity, and energy to help make it happen.

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Advocacy

Speak Up for Kids’ Cancer 2015 Advocacy Recap

by Danielle Leach, Director of Government Relations and Advocacy, St. Baldrick's Foundation
December 17, 2015

It has been a remarkable year for childhood cancer on Capitol Hill, and we want to share a few highlights with you!

We’ve been proud to work with the combined childhood cancer community in all of this amazing work. Just take a look at all we have accomplished this year together:

Childhood Cancer STAR Act

Childhood Cancer STAR Act

After months of negotiations and discussions, we were successful in introducing a bipartisan and bicameral piece of legislation: The Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (S. 1883/H.R. 3381).

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Advocacy

What 6-Year-Old Scott Told Congress About Childhood Cancer

by Scott Lenfestey
December 2, 2015

Scott was diagnosed with acute lymphoblastic leukemia at the age of 3. After three and a half years of treatment, he took to the Hill in September to get the Childhood Cancer STAR Act on the minds of Congress. Now he’s back to remind everyone of how much work there is left to be done. Read his moving speech below and see how you can make an impact for kids like Scott everywhere.

Scott standing at the podium

Scott delivering his speech at the Childhood Cancer Summit in Washington, D.C.

Good morning! My name is Scott Lenfestey and I am 7 years old. I live in the Raleigh, North Carolina area and just completed three and a half years of treatment for acute lymphoblastic leukemia.

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Advocacy

Honored Kid Scott Hits the Hill to Advocate for Kids With Cancer

by Nancy Lenfestey
December 2, 2015

Four years ago, Nancy watched her 3-year-old son, Scott, go from a healthy boy to a child with cancer. This year, she watched him stand before Congress and deliver a speech on the importance of childhood cancer research and the STAR Act. She relives the experience below.

Nancy and Scott with St. Baldrick's CEO Kathleen Ruddy.

Nancy poses on Capitol Hill with her son, Scott, and St. Baldrick’s CEO Kathleen Ruddy.

If someone had told me back when Scott was first diagnosed that he’d be able to complete three and a half years of treatment, overcome multiple side effects from chemo, and go on to become a happy, vibrant kid who would speak before Congress, I wouldn’t have believed them. It was such a long road.

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Advocacy

An Open Letter to My Representatives: Why You Need to Support the Childhood Cancer STAR Act

by Carlos Sandi
August 14, 2015

Two of Carlos Sandi’s three children have been diagnosed with cancer — Althea, who died in 2006, and Phineas, who is now cancer free thanks to childhood cancer research. Carlos takes his family’s story to his representatives in this moving letter.

Althea and Phineas Sandi

The Sandi family (left to right): Fiona, Carlos, Phineas and Tina.

Dear Senators:

I am writing today to ask for your support of the childhood cancer STAR Act. This bill reflects the highest-level legislative priorities as defined by rounds of carefully considered conversation among the many groups comprising the Alliance for Childhood Cancer.

I don’t know what the rubric or algorithm is for deciding if you should co-sponsor a bill, but I can tell you from personal experience that without direct federal support for childhood cancer research in the form of the NIH Pediatric Oncology Branch, my son Phineas would not be spending this week attending a Lego robotics camp; he would be every bit as dead as his older sister who we lost to acute myeloid leukemia in 2006.

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