Tag Archives: Congressional Childhood Cancer Caucus

September 2018 in our Capitol

Updated 9/12/18 CureFest will operate as planned. Special Notice: Hurricane Florence WILL NOT have an impact on CureFest. Please read the following statement from CureFestUSA CureFest will post regular updates on our facebook page. The surest way to receive updates is to … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , , , | 1 Comment

My Calling

I came into the childhood cancer community in 2013 as a member of the “general public”, having no personal connection to a child with cancer. My journey is different but not without appreciation for what cancer is and how devastating … Continue reading

Posted in Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , | 3 Comments

Fixing the Faults

This summer I wrote a raw piece entitled “The Fault in Our Systems”. Our family’s efforts to get Nathalie access to immunotherapy treatment (available to adults) seemed to be going nowhere. The inequities were everywhere and the playing field was … Continue reading

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Never Ever Capitalize “cancer”

Every Year in September during the Childhood Cancer Summit and CureFest I remember five years ago, meeting Carson’s mother and Max’s grandfather. Richard Plotkin, a retired lawyer, read a book written by Annette Leslie’s, then 17 year-old son, Carson. He was … Continue reading

Posted in Childhood Cancer, Pediatric Cancer, Uncategorized | Tagged , , , , , , , | 5 Comments