Republican Leadership Press Conference:
November 30, 2016
Speaker Paul Ryan (R-WI)
Majority Leader Kevin McCarthy (R-CA)
Majority Whip Steve Scalise (R-LA)
Conference Chair Cathy McMorris Rodgers (R-WA)
Energy and Commerce Committee Chairman Fred Upton (R-MI)
Rep. Tim Murphy (R-PA)
Cathy McMorris Rodgers Remarks as Delivered:
“Max Schill is a seven-year-old who has a rare disease known as Noonan Syndrome.
“Earlier this month, we were working with Max’s mom about writing a blog post, when Max said, ‘You know what? I want to write on this blog.’
“And here’s what Max had to say; some of his story in his own words:
“’There’s over 7,000 rare diseases in the world…Treatments can take over 15-20 years — and cost billions of dollars!’
“Max says, ‘I don’t have that kind of money in my big blue piggy bank — I only have about a hundred dollars. I don’t think that will get 21st Century Cures very far.’
“He says, ‘We need to smack down and take down the horrible diseases. We all deserve treatments and cures.’
“Max’s story is personal to me, too.
“I know how it feels to be told that your child’s life is going to be a little different than you dreamed.
“There’s unknowns and there’s challenges.
“But when the opportunity arises for a bold path forward, we need to seize it.
“And that’s why I want to join—I’m so grateful for the leadership of Chairman Upton and Tim Murphy on 21st Century Cures.
“Because Max is just one face, of millions facing life with diseases or conditions that currently have no cure.
“There’s Max, there’s a mom with breast cancer, there’s a grandparent losing precious memories to Alzheimer’s, the teen with mental illness who struggles in silence…
“They’re all the inspirations behind this bill and why we come together to cross the finish line today.
“We’re hitting the ground running with a Better Way – a way that includes research and development.
“A way with longer lifetimes and more birthdays.
“A way of hope.”