The U.S. House Committee on Energy and Commerce recently honored the end of Neurofibromatosis (NF) Awareness Month, held in May, by emphasizing the Child’s Tumor Foundation “Shine a Light on NF” movement.
The campaign asked the U.S. to “Shine a Light on NF” by illuminating several different landmarks. In response, leaders agreed to shine a light on the Children’s Hospital of Philadelphia as well as Niagara Falls.
The campaign included a hashtag, #EndNFBut, to extend the purpose beyond the lights. For this portion of the campaign, some NF patients shared their personal stories through social media. The Children’s Tumor Foundation chose to feature some of the most inspiring stories.
One of these was Aidan Fraser, a 16-year-old boy from New York. When he was just eight months old, doctors diagnosed him with NF1. After another six months, he was paralyzed below the waist. He underwent multiple surgeries and adversities, including his father’s death during the September 11th terrorist attacks. Fortunately, thanks to his MEK Inhibitor treatments, his tumor is 40 percent smaller than ever before.
Jess Toews is a 34-year-old woman from Kentucky. She was first diagnosed with NF2 when she was 27 years old. On her 28th birthday, she scheduled surgery to take out the tumor, which cost her all of her hearing on the left side. Now, with the Avastin drug, much of her hearing has returned.
