On the recordNovember 1, 2017
Mr. Speaker, in closing, I want to mention how I came to really be converted to the cause of right to try. I served in the Arizona State Legislature with Laura Knaperek, who was also serving in the legislature when I first met her. By 2014, she was no longer serving in the State legislature. She was an advocate. That year, Laura was in the fight of her life against ovarian cancer, and her mission was to see right-to-try legislation passed into law. In the end, her efforts for this cause succeeded beyond everyone's wildest expectations when 80 percent of the electorate in Arizona voted to enact right to try. But, unfortunately, Laura is not with us because she lost her brave battle with cancer last year. Her legacy as a tireless patient advocate lives on. I will continue to carry on the fight not just for Laura Knaperek, but for all those patients across this country who are battling against the odds every day. I am joined by those who are here tonight, those who have cosponsored this bill, and many other advocacy groups, such as the Goldwater Institute in Arizona that continues to fight for this. I fight for Bertrand Might. Bertrand is a very special little boy. He was the first person ever to be diagnosed with a rare, fatal genetic disorder called NGLY1 that has left this 7-year-old paralyzed. Because the disease was only identified by scientists in 2012 and only a few people worldwide have been diagnosed with it, there is no cure and no treatment available.…





