#IGiveBeyond: With Rock Against MS, Rock stars rally to help a music industry publicist fight the crippling disease of multiple sclerosis.
In the early 2000s, if you wanted to find out what the biggest hard rock bands were up to, you called Nancy Sayle. The LA-based publicist represented so many “rock gods” – Warrant, Slaughter, Winger, Steve Vai, Zach Wylde – that she referred to herself as the “queen of the 80s hair bands.”
Sayle has had a long history in the music industry. Back in the 80s, while still in college, she started helping out a few friends in bands by working the lights and acting as their drum tech during concerts. “I thought, ‘This is fun,’” she says.
The fun didn’t last. Within a two-year period, Sayle was involved in two car accidents. First her car was hit by a truck, and then by an SUV. Her neck was so badly damaged in the collisions that she had to give up touring. That’s when she decided to become a publicist. She started to approach bands, offering to work for free in exchange for experience. Gradually she built up her rock star roster.
Searching for words
Conversation has always been easy for Sayle. Her ability to talk herself into opportunities helped her break into the music industry. But in 2007, words started to escape her. “I couldn’t say “cat.” I’d say, ‘You know, with a tail? It’s fuzzy and it meows,’” she says. “It made me nuts.”
For a year and a half, Sayle went from doctor to doctor looking for answers. One neurologist told her the mental fuzziness was a normal byproduct of her age. “She said, ‘You’re 44. As you get older, you’re like a computer, and as a computer gets so much information it kind of clogs up,’” she says. “I stopped her. I said, ‘Are you seriously throwing that rubbish on me?’”
Other doctors attributed her symptoms to the aftereffects of her car accidents. Unconvinced, she insisted on having a brain scan. In 2009, an MRI revealed multiple lesions in her brain. Sayle finally had her diagnosis. She had multiple sclerosis (MS).
In MS, the body’s own immune system mistakenly targets myelin – the protective coating surrounding nerve fibers – and attacks. Scar tissue forms, interrupting the normal back-and-forth transmission of nerve signals to and from the brain and spinal cord. This damage leads to symptoms like numbness and tingling, as well as the mental fog Sayle had been experiencing.
The money runs out
In 2012 Sayle got hit with yet another diagnosis – a noncancerous tumor near the pituitary gland in her brain. Between MS and the brain tumor, her medical bills started to mount. “That’s when a lot of people were just not showing up to hire me,” she says. “I went through a lot of money.”
One day, Sayle was hanging out at the home of Billy Idol’s guitarist, Steve Stevens, and told him about her brain tumor diagnosis. “He’s like, ‘Oh my God.’ He said, ‘After 30 years, you’ve done everything for everyone else. We’re going to do something for you.’”
Stevens recruited fellow Billy Idol guitarist, Billy Morrison, and the two started working on plans for a concert to benefit Sayle. At first, she worried about having an entire concert focused on her, but Stevens convinced her the event would also inspire others living with MS. “Then it started giving me a purpose,” she says.
Rock Against MS
On March 27, 2013, the first Rock Against MS benefit concert was held at the Whisky a Go-Go in Hollywood. The lineup was a who’s who of musicians, including Lemmy Kilmister (Motorhead), John 5 (Rob Zombie), Steven Adler (Guns N’ Roses), Jack Russell (Great White), Marky Ramone (Ramones), Billy Idol, and Rick Springfield. “It was the most insane thing I’ve ever watched,” Sayle says. “It was five solid hours of music.”
Rock Against MS raised $30,000 for Sayle, taking a heavy load off her financially. It also got her thinking about ways to use the event’s publicity to help others dealing with the financial burdens of MS.
She turned Rock Against MS into an annual event. Its fifth show was held at the Los Angeles Theater in March 2017. She’s also expanded into other fundraising events, like a Halloween-themed horror night and car show.
Sayle’s goal is to raise enough money to build resource centers called THE ROCK HOUSE to provide programs for people with MS, their family members, and caregivers. “They can get emotional therapy, physical therapy, reflexology, painting lessons,” she says. Rock Against MS is also providing grants to MS patients to help with everyday financial needs – like building a wheelchair ramp in their home, or paying for college.
“We do have some lofty goals,” Sayle says. “Not just putting these events on, but getting people to donate every month.”
One of her biggest goals is to get the word out about MS and its impacts on the people who live with it. “Everybody knows cancer. We have to create awareness [about MS],” she says. “Let’s help people now.”
September 11, 2017
Janet O’Dell, RN