How 65 Roses Redefined Cystic Fibrosis

65 Roses and Explaining Cystic Fibrosis to Children

physician listening to a patients lungs as the lungs are affected in cystic fibrosis
What is the story of 65 roses and cystic fibrosis?. Adam Berry / Stringer / Getty Images

What is "65 Roses?"

The term “65 roses” is a nickname for cystic fibrosis (CF). Cystic fibrosis is a genetic condition which causes digestive fluids, sweat, and mucus to become thick and sticky—blocking up airways, digestive passages, and other ducts throughout the body. Because of the blockages caused by CF, the disease is eventually fatal.

Nowadays, thanks to research and advances in medicine, many people with CF live well into their thirties and the average survival rate in 2016 was age 37.

Decades ago, however—before the advanced technologies we have today—the life expectancy for those with CF didn’t extend past early childhood.

The Story Behind the Term "65 Roses"

The term "65 roses" was coined in the late-1960’s, by Richard (Ricky) Weiss a four-year-old with cystic fibrosis. The young boy’s mother, Mary G. Weiss, became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that all three of her sons had CF. To help raise funding for the disease, Weiss made phone calls to gather support for CF research. Unbeknownst to Weiss, Ricky was nearby, listening in on her calls.

One day, Ricky, at four-years-old, confronted his mother and told her that he knew about her calls. His mother was surprised, because she had kept any knowledge of the condition hidden from her sons. Confused, Weiss asked Ricky what he thought the phone calls were about. He answered her, "You are working for 65 Roses."

Needless to say, his mother was incredibly moved by his innocent mispronunciation of cystic fibrosis, as have many people since that day.

To this day, the term "65 Roses" has been used by to help children put a name to their condition. The phrase has since become a registered trademark of the Cystic Fibrosis Foundation, which adopted the rose as its symbol.

The Weiss Family Today

Richard Weiss died from complications related to CF in 2014. He is survived by his parents Mary and Harry, his wife, Lisa, their dog, Keppie, and his brother, Anthony. His family remains dedicated to finding a cure for cystic fibrosis.

About the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation (also known as the CF Foundation) was founded in 1955. When the foundation was formed, children born with cystic fibrosis weren't expected to live long enough to attend elementary school. Thanks to the efforts of families like the Weiss family, money was raised to fund research to learn more about this little-understood disease. Within seven years of the foundation's start, the median age of survival climbed to age 10, and has only continued to increase since then.

In time, the foundation also began supporting the research and development of CF-specific drugs and treatments. Nearly every FDA-approved prescription drug for cystic fibrosis available today was made possible in part due to support of the foundation.

Today, the CF Foundation supports continued research, provides care through CF care centers and affiliate programs, and provides resources for people with CF and their families. Awareness of the diagnosis even before symptoms appear has allowed many children with CF to receive treatments

Screening for Cystic Fibrosis and Carriers

Improvements have been made not only in the treatment of cystic fibrosis, but our ability to detect the disease early and even find out if a parents happens to carry the gene.

Genetic testing is now available to determine if you are one of the 10 million people in the United States who carry the CF Trait—a mutation in the CFTR gene.

Newborn screening for cystic fibrosis is performed in most states, and can detect the possibility that the gene is present and lead to further testing. Prior to this testing the disease was often not diagnosed until symptoms appeared, including delayed growth and respiratory problems. Now, even before the disease is apparent, treatment can begin.

Cystic Fibrosis Advocacy

If you're moved to join the Weiss family efforts in making a difference for those with cystic fibrosis, learn more about becoming an advocate. To get a better idea first about the immense changes advocacy has made in the lives of those living with the disease. check out these famous people with cystic fibrosis who are, and have been, and example of hope.

Sources:

Cystic Fibrosis Foundation. The 65 Roses Story. https://www.cff.org/About-Us/About-the-Cystic-Fibrosis-Foundation/The-65-Roses-Story/

U.S. National Library of Medicine. Medline Plus. Cystic Fibrosis. Updated 02/15/16. https://medlineplus.gov/ency/article/000107.htm

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