Dedicated to Seeing Children and Roses Bloom

It may seem otherwise, but Mary Weiss hasn’t worked continuously for almost 50 years fighting Cystic Fibrosis.

In 1964, she took two days off.

It was on a Friday – Sept. 11 – that she and her husband, Harry, were told their 4-year-old son Richard had the devastating disease.

“I cried all day Saturday, and all day Sunday,” she said. “That Monday, we went to give the doctor a check, and I said, ‘Find a cure.’”

Since that diagnosis in Montreal, where they were living at the time, Weiss has worked fervently on behalf of the Cystic Fibrosis Foundation. She began modestly, with tea at her Palm Beach home with other young moms. Those small gatherings eventually grew into a brunch at the Flagler Museum. There was an Oscar de la Renta fashion show presented by Saks; Rose Kennedy, the matriarch of the Kennedy clan, was a guest.

“People loved the format,” she said. “It was fast and simple.”

Mary Weiss

Mary Weiss

Today, the Palm Beach affairs are known as “65 Roses,” and this year’s 46th annual event will be hosted at The Breakers Jan. 10, 2013.

Word of mouth

Weiss began by speaking with friends at home and in chance meetings. She approached civic groups and presented to social organizations. She was simply “trying to recruit people to understand” the disease.

It wasn’t easy.

In fact, she first encountered skepticism from Richard’s doctors.

Richard Weiss, Arthur Weiss, Anthony Weiss

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

CF, an inherited chronic disease that affects about 70,000 people worldwide, wasn’t well known at the time; few children lived to attend elementary school.

“From the time he was born, I had a feeling something was wrong with him,” she said. “He was very frail. I would go for four years, from doctor to doctor, saying ‘There’s something wrong with this child.’”

At first it was suspected that Richard suffered from celiac disease. When that was ruled out, a friend suggested it might be CF. That, too, was initially dismissed – until one particular visit to a doctor.

“He put his books down and said, ‘Richard has Cystic Fibrosis, and I’m 98 percent sure Arthur [Weiss’s older son] has it also.’”

Arthur was two years older than Richard, and though she didn’t know it at the time, she was pregnant with the couple’s third child, Anthony.

The doctor suggested they resign themselves to the diagnosis.

“’Take him. He won’t live older than 8 or 9. Don’t jump on a plane to see other doctors. Don’t contact the Cystic Fibrosis Foundation – they’ll only send you depressing literature,’” she recalled being told.

Weiss assiduously avoided the advice. Her family moved from Montreal to Palm Beach so the kids could benefit from the salty ocean breeze, and she soon created an annual event with an unusual name derived from a curious boy.

‘65 Roses’ is born

One day, as Richard overheard his mom phoning organizations soliciting their help, he approached her.

“I know what you’re working for,” he declared.

“What am I working for?” she asked.

“You’re working for 65 roses,” he said, unable to pronounce the disease.

From that day on, the annual event was known as “65 Roses.”

CF is caused by a defective gene and attacks the lungs and digestive system. Its protein product causes the body to produce unusually thick, sticky mucus. This mucus clogs patients’ lungs, which can lead to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

The median life expectancy for CF patients is 37.

Arthur passed away 16 years ago from CF, at the age of 36. Richard and Anthony, who’s also afflicted with the disease, are both married and live in the Tampa area.

With Weiss’s considerable help, progress is being made. In 1989, researchers found the most common gene that causes CF. Today nearly 30 new drugs are available or in development – more than ever in the history of the disease – and scientists are exploring the use of gene therapy. Locally, St. Mary’s Medical Center is one of 110 CF Foundation- accredited care centers nationwide, which provides specialized treatment and support for patients. The well-known former NFL quarterback Boomer Esiason, whose son suffers from CF, is help spreading the word.

Meantime, the rose, inspired by young Richard, has become a symbol of the Cystic Fibrosis Foundation. Though Weiss has other interests – she studied for her master’s degree in English literature and loves classical music – her commitment to CF hasn’t wavered.

“I look forward to the day when cystic fibrosis is cured,” she said, “so children and roses continue to bloom.”

For more information on the 2013 “65 Roses Gala Reception” at The Breakers, call Chanda Fuller, (561) 683-9965.

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