How 65 Roses Redefined Cystic Fibrosis

The term 65 Roses has helped children understand cystic fibrosis for decades

Hospital Patient
Hospital Patient. Adam Berry / Stringer / Getty Images

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 fatal. Nowadays, thanks to research and advances in medicine, many people with CF live well into their thirties.

However, decades ago — before the advanced technologies we have today — the life expectancy for those with CF didn’t extend past 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 fundraise, Weiss called made phone calls to gather support for CF research. Unbeknownst to Weiss, Ricky would be 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, to which he answered, "You are working for 65 Roses."

Needless to say, his mother was incredibly moved by his innocent mispronunciation of cystic fibrosis, as have many since who hear the story.

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, in the early years, money was raised to fund research of the little-understood disease. Within seven years of the foundation's start, the median age of survival climbed to 10 years old and has only continued to increase over the years since.

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.

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