Tag Archives: Gabriella Miller Kids First Research Act

Kids First 2.0

Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 6556) which would redirect penalties collected from pharmaceutical companies that break the law to critical rare pediatric disease research. Representatives Tom Cole (R-OK-04), Peter Welch … Continue reading

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

Two Little Words

Two words that are used most when people contact Members of the House or Senate are: “I want,” and “I need.” Representatives and Senators hear them everyday. The two words they seldom hear are “Thank You.” This year alone, Congress … Continue reading

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

Lobbyist

Lobbyist… There, I said it! For me, it’s very difficult saying the “L” word. It never has felt good rolling around in my mouth, banging up against my molars and sliding out between my tight lips. I have always hated that … Continue reading

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 6 Comments