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As a viral campaign to raise funds for ALS research spread through social media, one of the most powerful women in Hollywood received the news that she had developed the debilitating disease. Nanci Ryder, veteran talent publicist and co-founder of BWR Public Relations, along with client and friend, actress Emmy Rossum, joins The Doctors to raise awareness for ALS and to share personal details about her ongoing battle with the devastating disease.
Amyotrophic lateral sclerosis (ALS) is a neurological disease that causes a progressive degeneration of nerve cells in the brain and spinal cord that are essential for initiating muscle movement. Also known as Lou Gehrig’s disease, the progressive disorder commonly develops in people between the ages of 40 and 70 and leads to an average life expectancy of two to five years from the time of diagnosis.
In Nanci’s case, the disease has affected the motor cortex of her brain near the bulbar neuron region, which has caused severe speech problems. According to board-certified neurologist Dr. Merit Cudkowicz, professor of neurology at Massachusetts General Hospital at Harvard Medical School, 20 percent of ALS patients start with this type of ALS, which tends to affect women and can lead to the loss of ability to swallow and speak.
“If you would have said I would lose the ability to speak, I would have said, ‘You’re crazy!’” Nanci says.
For a publicist who helps A-list celebrity clients prepare for interviews, losing the ability to speak is unfathomable. “All I do is speak, and I could not speak effectively,” she adds, explaining her decision to retire from her job.
“My hope for Nanci is that her disease doesn’t progress,” says board-certified neurologist Dr. Robert Baloh, director of neuromuscular medicine in the Department of Neurology at Cedars-Sinai. He adds that if her condition were to worsen, they could consider options such as stem cell therapy and gene therapy to slow the progression and improve her symptoms.
Dr. Baloh further explains that while physical therapy can help treat the symptoms of ALS, he and his fellow researchers, including Dr. Cudkowicz, are actively searching for a cure.
“[We] spend one day in the clinic and the rest of our time doing research. Since we don’t have that many things we can do to change the course of the disease, it’s the better use of our time,” he says.