Honored Kid Scott Hits the Hill to Advocate for Kids With Cancer
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 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.
An Open Letter to My Representatives: Why You Need to Support the Childhood Cancer STAR Act
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.
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.
Speak Up for Kids’ Cancer: Tell Congress to Support the STAR Act
Here’s what you should know about the most comprehensive childhood cancer bill to ever hit Congress, and how you can help create change for kids with cancer.
In June, over 300 childhood cancer advocates hit Capitol Hill for Childhood Cancer Action Days. They asked our legislators to make childhood cancer a national priority and to support the Childhood Cancer Survivorship Treatment Access and Research (STAR) Act, a bill that addresses some of the major issues facing the childhood cancer community.
The STAR Act has three main areas of focus:
A Win in Washington for Childhood Cancer Research
Our advocacy leaders have been busy working with Congress to make pediatric cancer funding a national priority. While negotiations will continue, the preliminary funding agreements are in from the House and Senate, and we’ve got the details for you right here. (Spoiler alert: There’s good news for pediatric cancer research!)
Advocates gathered in Washington, D.C., for Childhood Cancer Action Days 2015.
All told, 91 childhood cancer organizations came together to sign our letter to Congress, and I’m excited to say that our hard work is starting to pay off!
Ambassador Lauren Heads to Capitol Hill for Childhood Cancer Action Days
Today, 2014 Ambassador Lauren is among more than 300 childhood cancer advocates in Washington, D.C., fighting to make childhood cancer a national priority. Here’s what she wants Congress to know.
As I prepare to speak on Capitol Hill for Childhood Cancer Action Days, I can’t help but look back on my grueling journey with pediatric cancer.
I Took My Story to Congress, and So Can You
Danielle Leach, our Director of Government Relations and Advocacy, received an exciting invitation last month — she was asked to speak to the House Appropriations Committee. Step into her shoes as she recounts her experience testifying to Congress about childhood cancer and the need for research funding.
Danielle testifies to Congress about childhood cancer.
BREAKING NEWS: FDA Approves Childhood Cancer Drug
We’ve got some spectacular news. Really, really big news.
In the last 20 years, only two new drugs have been approved that were specifically developed to treat children with cancer.
Yesterday, that changed. Now there are three.
A Sensational Six Months for Childhood Cancer Advocacy
It has been a tremendously exciting time for childhood cancer in Washington, D.C.
St. Baldrick’s has been at work with our colleagues in the cancer community to make the case for increased funding and attention for childhood cancer. Happily, our cause has received a lot of positive, high-profile attention on Capitol Hill and at the White House in the past several months.
Here are the highlights:
Now Is the Time to Speak Up for Kids’ Cancer
The mid-term elections are over, 2015 has begun and our new senators and representatives are taking their seats. Should passionate, well-informed pediatric cancer advocates wait and see what they’ll do? No way.
St. Baldrick’s Hero Fund manager, Kelly Forebaugh, (on left) and board member Amy Bucher at Childhood Cancer Action Days 2014
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