By Survivor and Advocate Andy Lipman
Imagine every breath you take having to be inhaled through a narrow drinking straw. A person with cystic fibrosis does this every day, every moment, every breath.
The median life expectancy for cystic fibrosis (CF) patients in the United States hovers around 40 years. CF survivor Andy Lipman has defied all odds to become a college graduate, Olympic-torch bearer, runner, husband, father, activist, and author. Lipman has written a new book The CF Warrior Project: 65 Stories of Triumph Against Cystic Fibrosis to celebrate the people who, like him, persevere and live life to the fullest every day even though they have a terminal, invisible disease. The book of hope focuses on 65 different warriors from all over the globe who have one thing in common – they each have cystic fibrosis. It features stories of people who defy the odds, take the cards they are dealt, and go far and beyond what was expected. The CF Warrior Project is set for release in May 2019, which is also Cystic Fibrosis Awareness Month.
Lipman is focusing on 65 stories in the book because that number is significant in the cystic fibrosis community. The “65 Roses” story dates back to 1965 when an observant 4-year-old, hearing the name of his disease for the first time, pronounced cystic fibrosis as “65 Roses.” Today, “65 Roses” is a term often used by young children with cystic fibrosis to pronounce the name of their disease.
Stories of victory in The CF Warrior Project include survivors who have: conquered Mount Everest; become a circus acrobat; received a lung transplant and ran a marathon a year later; and secured approval of breakthrough CF drugs in his country. These people, from teenagers to septuagenarians, have accomplished amazing things. Each story has its own merits, but the common theme among them is how these CF heroes maintain positive attitudes despite the challenges of their disease.
“Living life requires more than just breathing. It requires loving every minute we have on this earth,” Lipman says. “This is a book about warriors who never give up. They made their lives purposeful.”
Legendary singer Céline Dion, Transformers star Megan Fox, volleyball great Gabby Reece, MLB Hall of Famer Chipper Jones, comedian and actor Lewis Black, singer Richard Marx, American Ninja Warrior Isaac Caldiero,The Bachelor’s Colton Underwood,and country music singer Tenille Artsjoin the voices of ambassadors endorsing The CF Warrior Project. Each has been touched in some way by CF. Dion says, “Andy’s book will provide hope for those who so desperately need it. These stories of strength and determination are inspiration to keep fighting in our own lives.”
Lipman was inspired to write The CF Warrior Project because of his lack of CF role models as a child. He became concerned after reading an encyclopedia article as a young boy that said he would not live to see his 25thbirthday.
“Now in my mid-forties, I thought a book about people living longer with cystic fibrosis was necessary and long overdue,” says 45-year-old Lipman. “I’m not just talking about people who are living their lives, but people who are also accomplishing amazing things while doing so. These inspiring stories will give hope to a new generation of CF warriors and their families, not to mention those of us in our twenties, thirties, forties and so on who could use a reminder here and there that life is there for the taking.”
Lipman is not just relating stories of survivors; he is also dedicated to finding a cure for this genetic disease. He and his family founded the Wish for Wendy Foundation in memory of his older sister, who died from CF after only 16 days of life. As of 2019, the foundation has contributed nearly $4,000,000 to help raise awareness for cystic fibrosis and fund research for a cure.
The CF Warrior Projectis Lipman’s fourth book. He has two written memoirs telling his story battling the long odds of a CF diagnosis: Alive at 25: How I’m Beating Cystic Fibrosis and The Drive at 35: The Long Road to Beating Cystic Fibrosis. In addition, he wroteA Superhero Needs No Capeabout a young person who grows up wanting to play Major League Baseball, but he must do so while fighting cystic fibrosis. Lipman currently lives in Atlanta, Georgiaa., with his wife Andrea and their 13-year-old daughter Avery and 10-year-old son Ethan.
A portion of the proceeds from The CF Warrior Projectwill go to various charities benefiting cystic fibrosis, including many of those featured in the book.