By Mervyn Rothstein
The first night, ten years ago, that Myron A. Hirsch put the Afternoon Edition, the Facial Pain Research Foundation’s web newspaper, online, he received an email.
“It was midnight,” says Hirsch, the Afternoon Edition’s creator and editor, known to everyone as Mike, and this email comes through. The first email. I open it, and the person writes, ‘My five-year-old wakes up and says, “Mum, why me?” And he’s in pain. So I started looking for help. And I found you. Can you help me?”
“Mum” was referred to a surgeon who had operated successfully on five-year-olds with Trigeminal Neuralgia. “She had emailed from London England,” Hirsch recalls. “The doctor emailed her and said if she brought her son to him in California for an examination, and the diagnosis was appropriate, he would do the operation gratis.” And that’s when I realized I could reach a worldwide audience. ”
Hirsch is a founding trustee of the Facial Pain Research Foundation, which is celebrating its 10th anniversary. It was begun on January 8, 2011, to raise funds to finance research into finding a cure for Trigeminal Neuralgia, one of the most painful diseases known to humankind, and other facial neuropathic illnesses.
It has raised more than $7 million to fund nine distinct research programs. The Foundation has also helped to create two venture-capital research corporations. The $7 million has also served in a “multiplier capacity“ resulting in more than $60 million in venture capital, National Institutes of Health or other funding sources for research into a cure.
One thing that thrills Hirsch, who is 92 years old, is the Afternoon Edition’s international reach. “The email proved to me that we can get around the world,” he says. “Someone in Eastern Europe wrote an opera and is giving the proceeds to us. I start every afternoon with a different story. The scientists write about their work. You, Merv, interview the scientists and write about your experiences with Trigeminal Neuralgia. Others write about their experiences. The stories travel far.”
Hirsch says he became involved with the Foundation “because I have to find a cure for Trigeminal Neuralgia for my wife, Harriet. We’ve been married 67 years. I felt her pain in my heart. My brain didn’t have a clue as to why she had it.”
His wife first suffered from the disease in 1994. After many pain-free years resulting from a Gamma Knife® radiation procedure, she experienced a return of Trigeminal Neuralgia in August 2010. Right now she is again pain free.
Hirsch, who lives in Naples, Florida, is an author, editor and book publisher who founded Whitehall Printing Company, a book manufacturer, in 1959. His company has printed thousands of books each year, including educational books on neuropathic facial pain for patients and their families as well as health-care professionals. He is also editor-in-chief and publisher for Collage Books. He is a former president of the Trigeminal Neuralgia Association-Facial Pain Association, and was an active board member for eight years.
He decided the best way to create the web site was as a newspaper. “I thought to myself, What’s the most-read newspaper, with all the news that’s fit to print? The New York Times. I thought I would emulate it in an amateur way and keep giving all the news about Trigeminal Neuralgia and nerve pain.”
He feels the site has been very successful. “It’s been a place where families who are suffering can come to. They hear about us through word of mouth, and they find that an awful lot of people want to help in some way.”
The newspaper is a forum where people can exchange information and ideas, such as ways to raise money. “Some people run races as benefits,” he says, “some have marathons, and I report on all that. And I get emails from more people who would like to have a race as a benefit, and I refer them to people who have already done that, who know how to organize. We’re sort of like a town hall.”
“We also provide knowledge about the disease. Many people think only middle-age or older people can get it. But we show them that children suffer from it as well.”
“And we give hope. We had a story about a little girl, Emily Garland, who was suffering, and a decade later, we showed a picture of her on horseback. She doesn’t have the pain. Think of the hope that gives to someone who thinks they’re doomed forever. Not if the scientists keep working. These stories enlighten people.“
One of the Foundation’s most important accomplishments, he says, was creating a consortium of scientists to get together to discuss their research into finding a cure for facial pain, compare notes, talk to each other, see what everybody else is doing.
“ Let’s just talk together,’ we said. And a few years later the U.S. government said, ‘Could we send somebody to your consortium?’ We said sure. It keeps growing and growing. You can’t stop this railroad. Because there’s too many people running it.”
What would he say to people suffering Trigeminal Neuralgia pain about the hope for a cure?
If we succeeded in putting a man on the Moon in only ten years, if we in America were able, in less than a year, to come up with a vaccine to stop the carnage of Covid-19, I think that in my lifetime — and I’m 92 — we’re going to have a cure for pain that is registered in the brain.”
Mervyn Rothstein was a writer and editor at The New York Times for 30 years, a reporter and columnist for Playbill Magazine for 29 years, and a member of the Nominating Committee for Broadway’s Tony Awards from 2011-14. His first symptoms of Trigeminal Neuralgia appeared in 2005.