Mother, author, activist: UM alum works to find cystic fibrosis cure

Leah Orr and her daughter Ashley, who she has donated millions of dollars on her behalf to find research on CF cures Photo credit: Leah Orr

Of the 40,000 children and adults in the United States living with Cystic Fibrosis (CF), children’s author and University of Miami alum Leah Orr’s 19-year-old daughter is one of them.

After learning of her daughter’s diagnosis, Orr knew that she needed to try to find a cure for the disease. Instead of grieving, she decided to write children’s books and use the proceeds to fund CF research for the thousands of people who are suffering in addition to her daughter.

“My children’s books’ money goes to cystic fibrosis for new research and development for drugs,” Orr, who graduated in 1989, said.

To date, Orr has raised $1.3 million dollars for the Cystic Fibrosis Foundation (CFF) from the revenue of books such as “Kyle’s First Playdate” and “Messy Tessy.” Both books revolve around a young woman, with “Kyle’s First Playdate”’s protagonist named after Orr’s daughter.

Cystic Fibrosis stems from a faulty protein that severely affects organs, cells and glands that produce mucus. The overproduction of mucus caused by the defective protein leads to destruction of lungs, the pancreas and other organs.

“There’s a really important protein that usually regulates sodium in and out of the cells and not having the protein causes people [who have CF] to have a dehydrated secretion blocking their airways,” said Myrtha Gregoire-Bottex, associate professor of clinical pediatrics at University of Miami, pediatric pulmonologist and director at the Pediatric Cystic Fibrosis Center. “People with CF cough a lot because they tend to have a lot of extra mucus.”

Challenges aside, Orr said her daughter is fortunate to not have experienced the worst aspects of CF.

“The internet is not exactly friendly when it comes to diseases. It’s very much like ‘the end of the world,’” Orr said. “We have just been very lucky because she’s always been pretty healthy.”

Prior to parenting and authoring, Orr led a career in hotel business after graduating from UM in 1989. She only began publishing children’s books after her daughter was born with CF.

Released in 2006, Kyle’s First Playdate, was her very first book.

“From there, I wrote three other children’s books,” Orr said. “Then, I waited until the kids were in college to start writing thrillers.”

Now that her daughter is in good health and is an adult, Orr said she finally has the time to venture into the mystery genre.

“I’m a huge Stephen King fan and I love anything that’s a horror movie from “Friday the 13th” to “Scream,”” Orr said. “I always wanted to write my own but didn’t have the time to just sit for the 40 or 50 hours it takes to write, until the kids were completely out of the house.”

Orr’s most recent thriller trilogy, “Murder at the Opulence Hotel,” was released in 2021. It features “The Executive Suite,” “The Bar” and the upcoming “She Shed” — which will be on bookshelves in January 2023.

Currently residing in Jensen Beach, Fla., Orr continues to write and donate her proceeds from her novels to find a cure. Orr’s purposeful penning has landed her on television programs such as ABC’s Health Watch, NBC Today South Florida and renowned publications including Forbes Magazine and Medical News Today. More notably, her daughter was featured as a recipient on Oprah’s “The Big Give” in 2008 — winning $1 million dollars for the CFF.

“The CF foundation called all the local CF families and we had to go meet at a hotel where Oprah brought nebulizers, exercise machines and different things that the CF kids would need,” Orr said. “We didn’t know why we were there and then she gave us all the stuff, it was pretty awesome.”

Orr’s books are available for purchase on Amazon.