“I am thankful for the Children’s Tumor Foundation’s enormous efforts to support the research that led to such a trial. Now that selumetinib has been approved as the first-ever FDA-approved treatment, I am thrilled, that now other people with plexiform neurofibromas will have access to and can benefit from selumetinib; proud that Jane was one of the first 24 children in the world to take selumetinib.  She has seen it through from a Phase I trial to FDA approval, and her experiences, both good and bad, with the medication have helped guide researchers on how best to use it; and relieved that all of Jane’s hard work—all the trips to NIH, all the blood draws and MRIs and other tests, all the side effects and uncertainty—has paid off and will benefit others.”

-as told by her mom Kristy

“We are so thankful that the Children’s Tumor Foundation invested in the science that made the clinical trial for selumetinib possible! Cooper began the MEK inhibitor in November 2018, when he was 7 years old and has been taking it for a year and five months. We are incredibly thankful that all NF Heroes will now have access to the drug that changed Cooper’s life. We shudder to think of what would have happened if Cooper’s tumor had continued to grow. Before starting the drug, his tumor was nearly doubling in volume every 18 months. Since starting selumetinib, his tumor has not only stopped growing, it has shrunk 21%! Our hope is that it will be as life-changing for others as it has been for our family.”