The LUNGevity Foundation has named Janet Freeman-Daily, who is a stage IV lung cancer survivor, speaker, e-patient and award-winning lung cancer blogger, as the LUNGevity Hero for July. Janet is being awarded for her role in starting and moderating Lung Cancer Social Media (#LCSM), a revolutionary online community that assists patients in becoming more proactive participants in their own diagnoses, as well as for her outstanding advocacy work. She took an active role in addressing her disease by becoming her own advocate and by looking for treatments and clinical trials. Currently she is now helping others to become their own advocates.
Janet started battling against lung cancer in 2011 when a nagging cough persisted in spite of multiple rounds of antibiotics. There was no family history of the disease nor a smoking history and she could not believe she was being diagnosed with advanced non-small cell lung cancer. After radiation, chemotherapy and two separate recurrences of cancer, her prognosis was bad. She used online lung cancer forums in order to learn more about her disease and the available treatments where she found information about a new lung cancer mutation called ROS1. She was tested and proven ROS1-positive and found a trial using crizotinib. By January 2013, her scans were clear and she became inspired to help other learn how to access information.
Freeman-Daily became a technical translator using her training as an aerospace engineer to explain to others about her experience, the science of lung cancer treatment and what is going on in research in an easier, more accessible language for patients. She tracks research and treatments every day, supports survivors in online forums and writes a blog called “Gray Connections.” Her technical skills combined with her experience as a patient give her the ideal tools to communicate with both patients and researchers and to serve as a catalyst for discussion between the groups.
“LUNGevity Foundation is proud to name survivor and advocate Janet Freeman-Daily as the July LUNGevity Hero for her tenacious nature and her role inspiring, informing, and supporting the lung cancer community. By taking a proactive role in her lung cancer battle, relentlessly pursuing information about genomic testing and clinical trials, she was able to give herself the best chance at beating lung cancer. Now she uses her digital platform to give others their best chance at fighting the disease by tracking new innovations, translating the science into accessible information for patients, and spotlighting the disease and its survivors. Her journey serves as a reminder that the critical resources that we make available to patients and survivors can change peoples’ lives,” said Andrea Ferris, chairman and president of LUNGevity Foundation.
Freeman-Daily commented, “I’m honored that my work has meaning to patients, patient advocates and caregivers, and to be a source of encouragement to others thinking about advocacy and telling their stories.”