In 2011, Dr. Elad Shilo, a 47-year-old meteorologist at the Israel Meteorological Institute, was diagnosed with stage IV lung cancer and shocked his wife Shani and their children, ages six and nine. During the struggle for his life, Shani founded The Israel Lung Cancer Foundation, an organization designed to assist with informing and supporting lung cancer patients and their caregivers. This is the first lung cancer patient advocacy group in Israel.

“Elad’s disease was discovered at stage IV and our world was destroyed,” says Shani. “We went through very difficult years full of ups and downs.”

Elad was initially negative for two of the known lung cancer mutations and received chemotherapy. Later, his doctor, Professor Peled of Soroka Medical Center, suggested genetic sequencing and discovered that Elad had a new and different mutation in one of the genes related to lung cancer, and he began to receive a biological remedy. After a year and a half Elad’s condition worsened: his brain was full with metastatic disease.

“A year ago, with everything we were going through, I realized that I could help others. I’m a former dentist, work in research and I decided to help and make information accessible to patients. I want the next patient, the next family, that discovers that they have lung cancer feel that they are not alone, to have hope, to push for better diagnosis for better treatments,” explains Shani. “People do not know that there are new developments in the field. The second aspect relates mainly to the patient’s family, who undergo very difficult things. The person who takes care of the patient also suffers.”

Today the Israel Lung Cancer Foundation has a website in Hebrew, a Facebook page and a closed group on Facebook where hundreds of families, patients and caregivers learn from each other, share information and get hope and support. The organization advocates for lung cancer families, represents them in front of Israeli decision-makers, has digital support groups, meetings and more.

Today, the biggest problem of Elad is that four years ago he underwent whole brain radiation because second line treatment was not available. He survived but he has been affected severely by the radiation. It is our hope that patients today who have prospects of treatments will not undergo whole brain radiation.