At the February book release party for “The CF Warrior Project, Volume 2: Celebrating Our Cystic Fibrosis Community,” author Andy Lipman shared his own inspirational story as a son, husband, father, and friend who has battled cystic fibrosis for 49 years, as well as those of others, including spouses, parents, researchers and physicians who continue to champion for those with the condition.
The book was described by the event’s emcee, actor and sportscaster Dave Cohen, as a “love story to people who live with the life-changing diagnosis of CF and those who advocate for them.” With 65 stories, “The CF Warrior Project, Volume 2” is a series of memoirs about people from around the globe who now live into their 50s, 60s, and 70s, due, in large part, to: scientific breakthroughs and new medications; parents who have turned dire circumstances into impactful legacies; geneticists responsible for discovering the CF gene, which has led to many treatments and medications that slow the progression of the disease; and celebrities who have used their influence to bring awareness to the disease and hope to a community determined to find a cure.
Selecting 65 stories was intentional, according to Lipman; the number 65 is significant in the CF community. Back in 1965, four-year-old Ricky Weiss told his mother she was working for “65 roses” when he heard her on the phone fundraising for CF research. Today, even 58 years later, the term is revered in CF circles and often used by young children with CF to pronounce the name of their disease.
Cystic fibrosis is an inherited disease that affects the lungs and digestive system, keeping them clogged with thick, sticky mucus. Those with the condition deal with breathing and digestion issues. Over many years, the lungs become increasingly damaged and may eventually stop working properly. There is no cure, although scientific breakthroughs in recent years and new medications have significantly extended the lives of those with the disease.
One in 29 Caucasian people carry the CF gene. There is a higher proportion of CF chromosomes in Ashkenazi Jews and Jews originating from Tunisia, Libya, Turkey, and the country of Georgia than in the general population.
Lipman was diagnosed with CF as an infant in 1973, during a time when the average life expectancy for those with CF was 16. Today, the life expectancy has increased for many living with the condition. There are those who are now living into their 70s, and the oldest survivor today is 86.
Lipman stays in optimal health through a daily regimen that includes 40 to 50 pills, including vitamins and digestive enzymes, taken at various times throughout the day. He adheres to a rigorous workout routine every day that includes weight training and running. In fact, he has run the Peachtree Road Race since 1997, participated in a triathlon, and continues to set strenuous goals for himself.
As part of his treatment plan, Lipman wears a specially designed vest twice each day to break up the mucus in his lungs and uses a nebulizer several times a day. But the game changer for Lipman came in 2019 when the FDA approved Trikafta, part of a class of drugs known as CFTR modulators. These drugs work by targeting the defective protein on a specific CF gene mutation that some individuals with CF have. Lipman remembers the day he learned that the drug had been approved.
“I had just appeared on the Today Show, and my mother called me, over the moon ecstatic. ‘They just approved Trikafta – and you fit,’ she said. One month later, I was on Trikafta. For the first time ever, I took a deep breath. Now I know how that feels,” he exclaimed.
Lipman’s exuberance for life was clear for all to see at the book release party. The large crowd was filled with fans, friends, supporters, and many in the CF community. According to his wife, Andrea, “Andy is dedicated to living. From the moment we met, I could see that he was nothing but goodness. Deciding to marry someone with cystic fibrosis is a big decision, but Andy is such a positive force for all of us.”
And it was Andrea who encouraged Lipman to write this book, the second in the series on CF warriors. Lipman conducted all the interviews himself, transposed the notes and spent 2 ½ years writing the stories. The sagas are riveting, and include chapters about: Dr. Joshua Sonett, chief of general thoracic surgery and director of Columbia University Medical Center, who conducted a double lung transplant on a CF patient and challenged him to cross the finish line at the New York City Marathon together – which they did less than a year later to the cheers and admiration of onlookers; Lap-Chee Tsui, a geneticist and research lead at Hospital for Sick Children in Canada, who, along with his team, identified the defective gene that causes CF; and Doris Tulcin, the dedicated co-founder of the Cystic Fibrosis Foundation, whose determination to find a cure for her infant daughter led her to start a national organization, raise millions, and who continues to support the organization, even today at 93 years old.
Perhaps one of the most touching chapters in the book is the one Lipman wrote about his own mother, Eva Lipman, born in a displaced persons camp in Germany shortly after the end of World War II, and who he called “his greatest champion.”
Eva immigrated to the United States at the age of three and, following her graduation from the University of Florida, moved to Atlanta where she met and married her husband, Charles. A member of Delta Phi Epsilon sorority, she was active in collecting donations for the chapter’s philanthropy, the Cystic Fibrosis Foundation – never imagining the role the foundation would play in her own family’s life years later.
The couple’s first child, Wendy, was born with CF and lived for 16 days. Andy did not know that his sister had died from CF until he was 25 because his mother did not want him to become discouraged about his own life. Instead, she encouraged him all along the way, even pointing out a poster with a body builder and fibbing as she told her young son that the man had CF. While not true, Lipman admits her story gave him the added resolve he needed to build his stamina.
“I hope that readers can see all the progress that is being made regarding cystic fibrosis research,” said Lipman. “This book is about warriors who persevere and live life to the fullest every day even though they have a terminal, invisible disease. They have made their lives purposeful and, against all odds, continue to fight!”
CF advocate Celine Dion concurs with Lipman and said, “I stand by Andy and all the CF Warriors worldwide as we continue to search for a cure for this disease that so desperately needs one.”
“The CF Warrior Project, Volume 2: Celebrating Our Cystic Fibrosis Community,” is the follow-up to “The CF Warrior Project,” which was released in 2019. The author of five books, all related to cystic fibrosis, Lipman has been featured on the Today Show, NBC Atlanta, CBS Atlanta, and CNN. Dedicated to finding a cure, Lipman works tirelessly to raise awareness and funds for cystic fibrosis. The Wish for Wendy Foundation, created in memory of his older sister, has raised more than $4.5 million to help generate awareness for cystic fibrosis and fund research for a cure.
“My main goal in publishing this book is to continue the momentum of hope that has been brought on by all the new breakout drugs. The CF Warrior Project movement will also make people aware that some patients aren’t able to take the CFTR modulators, and none of us have the fortune of a cure,” said Lipman.
“The CF Warrior Project, Volume 2: Celebrating Our Cystic Fibrosis Community” was released earlier this month and is available on Amazon, Barnes & Noble, Apple Books, and everywhere books are sold. Profits from the book will go to CF-related charities, which will include the Cystic Fibrosis Foundation.
- Debbie Diamond
- CF Warrior Project
- Volume 2: Celebrating Our Cystic Fibrosis Community
- Andy Lipman
- Dave Cohen
- Ricky Weiss
- 65 roses
- Peachtree Road Race
- Dr. Joshua Sonett
- Columbia University Medical Center
- Lap-Chee Tsui
- Hospital for Sick Children in Canada
- University of Florid
- Cystic Fibrosis Foundation
- Celine Dion