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Fatal Diagnosis Leads Flight Attendants on Journey to Save Others
The first sign of trouble struck during one of their frequent layovers in Japan. Toni Diamond and her husband, fellow United Airlines flight attendant Warren Schiffer, were out for a walk in early 2000 when she lost control of her left foot. Before long, her leg was numb.
She was scared as her husband helped her back to the hotel, but after stretching and massage, the problem disappeared. She and Schiffer - both members of the Association of Flight Attendants, now AFA-CWA - went on with their globe-trotting careers, flying to Japan, Brazil, Argentina and occasionally London.
But just two months later the foot trouble was back. Soon it was accompanied by weakness in her legs that spread to her arms, hands and fingers. After many tests and painful and invasive procedures at three top hospitals, Diamond, now 45, was diagnosed with the paralyzing and fatal ALS, better known as Lou Gehrig's disease.
The disease was progressing quickly, but Diamond was determined to use what energy she could muster to help others. About 30,000 Americans have ALS, officially called amyotrophic lateral sclerosis.
"Toni said she wasn't going to sit back and become a victim of this disease," said Schiffer, 47. "She decided that she would sacrifice her privacy and her energy to raise awareness and money toward finding a cure."
Diamond's doctors, some of the top ALS researchers in the country, gave the couple hope - not for her own prognosis, but for others who will face the disease in the future. But a breakthrough hinges on money and Schiffer said in talking with doctors, "You can almost sense their anger and frustration. They say, 'If I only had more to work with.'"
The government and pharmaceutical companies invest little in ALS research because the number of people afflicted is relatively small - it's an "orphan" disease. But to patients and their families, it is a devastating diagnosis with a life expectancy in most cases of just three to five years.
After long talks with the Muscular Dystrophy Association, the first group that answered calls for help from Lou Gehrig's widow, Eleanor, Diamond and Schiffer partnered with MDA for a fundraiser in the fall of 2001. First called Wings of Hope, the celebrity-studded fundraiser has become an annual event since. It is now called Wings Over Wall Street for its support from the financial community, and its auction has included items donated by everyone from Britney Spears to Rudy Giuliani. The events have raised about $3.7 million, all of it going to ALS research.
In spite of her deteriorating health, Diamond insisted on attending the first fundraiser, arriving by air ambulance. She was on a ventilator by then and unable to speak. For a while she could move her mouth, allowing her husband to read her lips. His voice lightens remembering her first silent communication after she got the painful tracheotomy.
"We're in the ICU and she kept trying to tell me something and for the life of me it didn't make any sense," he said. "Finally I realized she was saying, 'Don't forget to tape 'Buffy' (the Vampire Slayer)."
But gradually, her ability to move any muscles at all disappeared and today she can communicate with only the tiniest movement in her eyes, when she's able to open them.
The couple lives in an handicapped accessible apartment built onto Diamond's brother's home in Cape Cod, Mass. Schiffer has been on voluntary furlough with United since November 2001 to be his wife's fulltime caregiver. Though she is physically immobile, she can still feel touch and pain, and she is mentally sharp. As a video on the ALS website describes, the disease leaves the mind intact "giving you a ringside seat at your own demise."
Her husband tapes movies, TV shows and sports that they watch together - New York Giants and Yankees games. He plays books on tape for her and talks to her as he always has. Even though she can't express herself, he still feels her generous, upbeat spirit and "huge heart."
"My commitment to her was that she would not go through this alone," Schiffer said. "I couldn't take this disease from her, but I would make sure she was never alone and do everything I could to give her the best quality of life I could under the circumstances."
She was scared as her husband helped her back to the hotel, but after stretching and massage, the problem disappeared. She and Schiffer - both members of the Association of Flight Attendants, now AFA-CWA - went on with their globe-trotting careers, flying to Japan, Brazil, Argentina and occasionally London.
But just two months later the foot trouble was back. Soon it was accompanied by weakness in her legs that spread to her arms, hands and fingers. After many tests and painful and invasive procedures at three top hospitals, Diamond, now 45, was diagnosed with the paralyzing and fatal ALS, better known as Lou Gehrig's disease.
The disease was progressing quickly, but Diamond was determined to use what energy she could muster to help others. About 30,000 Americans have ALS, officially called amyotrophic lateral sclerosis.
"Toni said she wasn't going to sit back and become a victim of this disease," said Schiffer, 47. "She decided that she would sacrifice her privacy and her energy to raise awareness and money toward finding a cure."
Diamond's doctors, some of the top ALS researchers in the country, gave the couple hope - not for her own prognosis, but for others who will face the disease in the future. But a breakthrough hinges on money and Schiffer said in talking with doctors, "You can almost sense their anger and frustration. They say, 'If I only had more to work with.'"
The government and pharmaceutical companies invest little in ALS research because the number of people afflicted is relatively small - it's an "orphan" disease. But to patients and their families, it is a devastating diagnosis with a life expectancy in most cases of just three to five years.
After long talks with the Muscular Dystrophy Association, the first group that answered calls for help from Lou Gehrig's widow, Eleanor, Diamond and Schiffer partnered with MDA for a fundraiser in the fall of 2001. First called Wings of Hope, the celebrity-studded fundraiser has become an annual event since. It is now called Wings Over Wall Street for its support from the financial community, and its auction has included items donated by everyone from Britney Spears to Rudy Giuliani. The events have raised about $3.7 million, all of it going to ALS research.
In spite of her deteriorating health, Diamond insisted on attending the first fundraiser, arriving by air ambulance. She was on a ventilator by then and unable to speak. For a while she could move her mouth, allowing her husband to read her lips. His voice lightens remembering her first silent communication after she got the painful tracheotomy.
"We're in the ICU and she kept trying to tell me something and for the life of me it didn't make any sense," he said. "Finally I realized she was saying, 'Don't forget to tape 'Buffy' (the Vampire Slayer)."
But gradually, her ability to move any muscles at all disappeared and today she can communicate with only the tiniest movement in her eyes, when she's able to open them.
The couple lives in an handicapped accessible apartment built onto Diamond's brother's home in Cape Cod, Mass. Schiffer has been on voluntary furlough with United since November 2001 to be his wife's fulltime caregiver. Though she is physically immobile, she can still feel touch and pain, and she is mentally sharp. As a video on the ALS website describes, the disease leaves the mind intact "giving you a ringside seat at your own demise."
Her husband tapes movies, TV shows and sports that they watch together - New York Giants and Yankees games. He plays books on tape for her and talks to her as he always has. Even though she can't express herself, he still feels her generous, upbeat spirit and "huge heart."
"My commitment to her was that she would not go through this alone," Schiffer said. "I couldn't take this disease from her, but I would make sure she was never alone and do everything I could to give her the best quality of life I could under the circumstances."