Richard was credited with being a major factor in the passage in July 2012, of the Creating Hope Act, which incentivizes pharmaceutical companies to invest funds in drugs for rare children’s diseases, including cancer. In early 2014, Richard was told that he was solely responsible for obtaining from the FDA the first ever Compassionate Use Waiver for a combination drug therapy, which included an experimental drug, for a child with cancer.
Richard was also on various national Pediatric Cancer Advocacy Committees relative to his involvement with the Coalition Against Childhood Cancer (CAC2) and otherwise. He consulted with Congress and the White House on pediatric cancer issues. Richard was often interviewed on the CBS Radio program, “People of Distinction”, syndicated nationally as to the work Richard was doing with MCF.
DECEMBER 4, 1944 – SEPTEMBER 4, 2019
His legislative advocacy has proven effective in the passage of several bills in a climate of congressional stagnation. Along the way, following Alexis’ death, Jonathan began to write and speak on issues impacting the childhood cancer community. Jonathan frequently interacts with members of Congress and their staff, the White House, as well as various regulatory agencies and other cancer foundations in an effort to improve the plight of children with cancer. A frequent contributor to the Huffington Post and as a guest writer in other media outlets, Jonathan has quickly become one of the most trusted voices in the childhood cancer community.