Why We Need a Tissue Navigator
The importance of tissue donation begins when a parent hears the life shattering news, “your child has brain cancer.” Had we known how important tissue is not only to scientific discovery, but also to a child’s cancer treatment plan, Michael may have had a very different journey. Let me explain. Cancer treatment is becoming more…
That’s Your Boy
It’s Michael’s birthday week! To celebrate I want to share an AMAZING story with you that I still can’t believe happened. In the past several years I have been frequenting pediatric cancer conferences (should have been a STEM major not a CPA, but who knew?). At a meeting in August, the question discussed was how…
Michael’s Master Plan – Impact
Twenty years old! Michael would be leaving his teen years behind next week but in my mind he will forever remain a teenager. His twin sister Bridget shows us each day what Michael could be accomplishing had he survived. And the reality is, despite his death, he is still making an impact every day. Michael’s…
Farewell DC
Although I have enjoyed every moment of this past month and a half, this last week of my internship has definitely been the best. I say that because, in the past week, I saw my work here come full circle. I spent Monday being trained on how to train other youth advocates. The following day,…
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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