Mary Weiss, Trailblazer in the Fight Against CF, Dies at 77

As a mother of three sons with cystic fibrosis, Mary along with her husband, Harry, was determined to do all she could to find a cure.

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This weekend, the cystic fibrosis community lost Mary Weiss, one of the great leaders in the fight against CF. As a mother of three sons with this disease, Mary along with her husband, Harry, was determined to do all she could to find a cure. Over the past five decades, Mary served in many roles as a passionate advocate in the fight against CF, positively impacting the hearts and lives of millions.

In 1965, she became a volunteer with the CF Foundation. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's then 4-year-old son, Richard (Ricky), who eventually succumbed to CF, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for. You are working for 65 Roses." He could not see the tears running down Mary's cheeks as she stammered, "Yes Ricky, I'm working for 65 Roses." Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. This marked the beginning of Mary's remarkable leadership in the battle against cystic fibrosis.

The Weiss brothers, Richard, 5; Arthur, 7; and Anthony, 16 months.
The Weiss brothers, Richard, 5; Arthur, 7; and Anthony, 16 months.

 

“The CF Foundation has lost one of the original 'founding mothers,' who relentlessly drove progress forward to help families living with CF,” said Foundation President and CEO, Preston Campbell III, M.D. “Mary's courage and fierce commitment in the fight against this disease will be remembered. And, it will continue to inspire our work in the quest for a cure.”

In addition to serving as a volunteer, Mary founded the CF Foundation's Palm Beach Chapter, holding an inaugural “Sixty-Five Roses” fundraising event, which began as a brunch and fashion show and is now an annual gala. Mary brought in the first $1 million gift that enabled the Foundation to launch the National Research Development Program in 1982, a collaborative between the Canadian and American CF Foundations that discovered the CF gene in 1989. This research helped the medical community gain watershed insights about what CF is and how to best navigate the long and complex journey toward a cure.

Mary Weiss (center) with Jana and John Scarpa at the 2015 65 Roses cocktail party.
Mary Weiss (center) with Jana and John Scarpa at the 2015 65 Roses cocktail party.

 

When Mary began the Palm Beach Chapter, there was no CF clinic in the area. Today, with the help of many generous supporters and organizations, there is a CF clinic at St. Mary's Hospital in West Palm Beach that serves approximately 120 patients in the tri-county area. “We love her and will miss her dearly,” said the executive director of the Foundation's Palm Beach Chapter, Chanda Fuller. “We will continue her work just as she would expect -- until we do find the cure for cystic fibrosis.”

Mary and her husband, Harry, were also instrumental in starting the annual CF Gala in Montreal, which has raised millions of dollars for research. Mary and Harry were awarded the Queen Elizabeth II Diamond Jubilee Medal in 2013 in recognition of their invaluable contribution to the CF community.

Mary died on April 16. She is survived by her husband Harry and youngest son, Anthony (Nancy) as well as her granddaughter, Amelia, numerous nieces, nephews and cousins. She was preceded in death by her parents, Corina (Guzman) Gruenebaum of Bolivia and Arturo Gruenebaum of Germany. She was also preceded in death by her two older sons, Arthur (Jan) in 1996 and Richard (Lisa) in 2014. She was 77.

Funeral services followed by interment will be held today (Tuesday, April 19), at 11 a.m., at Star of David of the Palm Beaches in West Palm Beach. In lieu of flowers, please make contributions to the CF Foundation in her honor: Cystic Fibrosis Foundation, 700 S Dixie Hwy #100, West Palm Beach, FL 33401. 

Read Foundation President and CEO Preston Campbell's blog post here.

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