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Blog

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…

posted on November 13, 2017
    Annual Appeal ● From The Heart
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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,…

posted on July 25, 2017
    Kira Goes To Washington
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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…

posted on July 20, 2017
    Advocacy ● Kira Goes To Washington
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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…

posted on July 19, 2017
    Advocacy ● Kira Goes To Washington
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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…

posted on July 19, 2017
    Advocacy ● Kira Goes To Washington ● News
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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…

posted on July 18, 2017
    Advocacy ● Kira Goes To Washington
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Michael Gustafson created the Swifty Foundation before his death at age 15 to raise awareness and funds for pediatric cancer research so that: “No other child will have to go through what I did.”

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