I voted for the first time in November, but this is not my first-time letting Congress know how I feel. In 2018 I lobbied on Capitol Hill with a group of childhood cancer warriors, siblings, and advocates. I shared my story with three members of Congress and pushed for legislation to help kids with cancer. Having gone through treatment for more than three years at this point, I was especially determined to cast my ballot in this year’s presidential election. As a new voter, I am also looking forward to being part of the St. Baldrick’s Speak Up for Kids’ Cancer Network so I can raise my voice for kids with cancer and childhood cancer survivors in the year ahead.
Federal Funding for Childhood Cancer Research: A Conversation with Dr. Ned Sharpless, Director of the National Cancer Institute
As the largest non-government funder of childhood cancer research grants, and as a leader in childhood cancer advocacy, the St. Baldrick’s Foundation has a deep interest in the work that the federal government is doing to advance treatments. As part of the St. Baldrick’s Foundation Impact Series, on January 14, 2021, St. Baldrick’s Foundation CEO Kathleen Ruddy had a conversation with Dr. Ned Sharpless, Director of the National Cancer Institute (NCI), about the NCI’s broad pediatric cancer portfolio.
The volunteers who make up the St. Baldrick’s Foundation certainly “think different” when raising money for childhood cancer research. And thinking outside the box was a trademark of the late great Dr. Bob Arceci – a St. Baldrick’s shavee, board member and world-renowned researcher.
In his memory, the St. Baldrick’s Robert J. Arceci Innovation Awards were created. The goal was to give doctors the freedom and flexibility to think outside the box – to explore avenues that may have been left unexplored otherwise. The grants are unrestricted, making them unique in cancer research. And they are big awards, at $250,000 a year for 3 years.
The first class of researchers to receive these innovation awards began in 2016. Dr. Charles Mullighan, from St. Jude Children’s Research Hospital received the North America award, and Dr. Sam Behjati, from Wellcome Sanger Institute in the U.K., received the International award. Read on to find out where they are now:
Enrollment on a clinical trial is often a child’s best hope for a cure.
Clinical trials offer children in treatment hope for a better future with fewer side effects. Clinical trials also help scientists to improve upon the standard treatments of today, making significant strides towards more effective and less toxic cures for children now and in the future.
In a year when it feels like most things have stopped due to the pandemic, research continues. While most research labs were affected by shutdowns for a time, researchers have found ways to carry on, working hard to find cures for childhood cancers and give survivors long and healthy lives. Read on to see a few interesting outcomes you’ve made possible.
That’s how Dr. Olivier Ayrault described the loss of two school friends to cancer when he was growing up. The experience left an indelible imprint on him and he believes set his course in life to do something to fight cancer.
Rare Cancer Day is September 30th, but the St. Baldrick’s Foundation fights rare cancers year-round.
What is rare disease?
When it comes to cancer, or even diseases as a whole, “rare” is a misleading word.
A rare disease is defined as “any disease or condition that affects fewer than 200,000 people in the United States, or about 1 in 1,500 people.” About 72% of rare diseases are genetic, and of those, 70% start in childhood.
Worldwide, people with rare diseases make up less than 6% of the population. But more than 6,000 rare diseases have been identified so far, and they affect more than 300 million around the world. If these people were a country, they would be the world’s third largest nation.
No matter when you joined St. Baldrick’s, you’re part of something bigger than anyone could have imagined at the first head-shaving event on March 17, 2000.
On what would have been our 20th anniversary, this year a pandemic had begun. It was a time for regrouping, rather than reflection. But now let’s look at what you’ve helped accomplish, and the challenges we have, to do more for kids with cancer.
Childhood Cancer Awareness Month is the perfect time to test your knowledge — and to spread the word about why you support lifesaving research through St. Baldrick’s. And you may learn something new!
Shamari is a 15-year old survivor, serving as a 2020 St. Baldrick’s Ambassador. She’s also a strong advocate for childhood cancer research funding and will be part of the Virtual Day of Action on September 9. Please join the Speak Up for Kids’ Cancer advocacy action network to join her!
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