Kira: From Washington to Chile and STILL Making a Difference
Some of you may recall that I spent six weeks in Washington, D.C. last summer as an intern with Kids v. Cancer. Remember all my terribly awkward Facebook Live videos? Well, I for one have tried strenuously to forget them, so maybe we should refresh our memories! I went to D.C. as a pediatric cancer…
For Too Many Kids September Doesn’t Mean Back to School
I can’t believe I’m writing about Childhood Cancer Awareness month again. I can’t believe this is the sixth Sept that Michael is gone. No Back to School for him or the thousands of other children who have lost their lives to cancer. What a shame…how unjust If you have children grumbling about going back to…
Caitlin’s Experience
Caitlin Holzer was part of a duo who recently shaved their heads and raised over $8,000 for the Swifty Foundation. Not only is her fiscal impact impressive, so is Caitlin herself. Her activism in the causes she cares about accurately exemplifies her remarkable character, and her passion for giving back depicts the inspiration that she…
Making Michael Proud
I start every meeting by opening my padfolio (that frankly took way too long to find at Office Max). In it, I have a few talking points scribbled down that I make sure to cover in every conversation I have about RACE. I try not to make my pitch seem too scripted, but I almost…
Catching the Law Up With Science
The RACE for Children Act is an update of the Pediatric Research Equity Act (PREA)which requires drug companies to develop their drugs not only for adults, but for children as well. The second loophole in PREA has to do with the scientific understanding of cancer. In the past, cancers have only really been identified by their physical…
Orphan Drug Exemption Loophole
Loophole 1: I am in Washington D.C advocating for Congress to pass the RACE for Children Act. I bet some of you are wondering what is the RACE Act, why is it important and why is the Swifty Foundation supporting it. The RACE for Children Act is an update of the Pediatric Research Equity Act…
It’s Not Just About the Research. It’s About the Kids
Most of our meetings are with young people. This past week, though, we had a meeting with a Senior Legislative Assistant who happened to be a bit older. This was a nice change of pace; she opened up a whole different dialogue with us and offered a unique perspective. When we were done with our…
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