Medical PR: Dystonia's musical tie-in strikes chord with media, public

An estimated 300,000 Americans suffer from dystonias, neurological disorders that cause involuntary muscle spasms.

An estimated 300,000 Americans suffer from dystonias, neurological disorders that cause involuntary muscle spasms.

And although the disease has the same profile as Parkinson's or Lou Gehrig's disease, it's not well understood.

"There's not only a lack of awareness from patients, but also from physicians," says Lindsey Jurca, who works on the account at the Chandler Chicco Agency (CCA).

Last year, the Dystonia Medical Research Foundation turned to CCA to position it as a place where patients, family members, health practitioners, and the public could find resources and support.

"Everyone has either a relative or has seen someone on the street with dystonia," says Glen Estrin, president of Musicians with Dystonia, a program run by the Foundation. "People have seen it; they just don't know what it is."


Dystonias can affect any part of the body, including muscles in the face, neck, limbs, and torso.

It can cause uncontrollable blinking or interfere with the vocal chords, impairing speech.

But the disease seems to be particularly prevalent - and debilitating - among musicians, affecting one in 200. "They feel like their life and profession is lost," Jurca says.

Music became the backbone of the campaign. CCA reached out to Leon Fleisher, the first living pianist to be inducted in-to the Classical Music Hall of Fame. Fleisher achieved world renown despite a dystonia that caused an involuntary curling of two fingers on his left hand.

"We always knew [his story] was compelling. It is an amazing story of hope and courage," Estrin says. "The way CCA packaged it, the press found it as appealing as we did."


CCA and the foundation launched the Freedom to Play campaign at Carnegie Hall, where the press was invited to interview the maestro and other dystonia experts.

Two medical meetings - of the American Academy of Neurology and the Movement Disorder Society - provided another opportunity for Fleisher to tell his story to the media and health professionals.

Fleisher also helped raise awareness through his latest CD, Two Hands, the first that he produced after finally receiving treatment. In the CD insert, Fleisher explained how his condition had been misdiagnosed for decades until he finally sought help at the National Institutes of Health.

"He had obviously tried everything under the sun, from hypnosis to yoga," Jurca says. "In addition to sharing his personal story at medical meetings and performances, [being able to purchase the CD] was very touching for a lot of people."

Reviews of the CD also provided an opening for the media to discuss the disorder.


CCA estimates that the push has garnered 198 million media impressions, and sales of Two Hands have reached 50,000, with a portion of the proceeds donated to the foundation.

Jurca notes that a community event for patients and doctors at the National Institutes of Health drew so many people that four satellite rooms had to be set up.

The campaign has also encouraged more people to contact the foundation, says Estrin.

"When I mention dystonia ... I don't see the shoulder shrugs; I don't see the blank stares," he says. "I really have to describe [the results of the campaign] as a juggernaut, the way this has spread through the US and Western Europe. It's mystifying how effective it's been."


Estrin notes that one challenge will be to continue to build interest in the disorder. "We know how fickle the press is," he says. "They don't want another dystonia story."

But the next phase of the campaign will also focus on leading academic and medical centers, he adds. Fleisher, for instance, will continue to help with the medical education effort by going on "grand rounds" with neurologists, serving as a case study of the disease.

PR team: Dystonia Medical Research Foundation (Chicago) and Chandler Chicco Agency (Los Angeles)

Campaign: Freedom to Play

Time frame: March to October 2004

Budget: $500,000

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