It all started with an innocent question, insists Robin Morgan, a volunteer with the Parkinson's Disease Foundation (PDF). She was attending one of the foundation's Parkinson's Advocates in Research (PAIR) training sessions when she asked, "How do we know that Parkinson's is primarily a men's disease?"

"Some of the doctors said, 'Tsk, tsk, we just know,'" says Morgan. "But others said, 'Interesting question. We don't know.'"

That question and the divergent answers inspired Morgan and several other women at the session, including Ronnie Todaro, MPH, vice president for national programs for PDF, to launch the first-ever Women and PD Initiative. Their goal? To recognize the unique needs of women with Parkinson's disease (PD), advocate for more research on the different ways the disease manifests in men and women, and put out a call to women to join clinical trials.

A Movement Is Born

The three-day conference in Florham Park, NJ, in mid-September focused on the question of what makes women different from men in terms of Parkinson's. To sow the seeds of a grassroots movement, the PDF raised money to bring a group of 25 women with Parkinson's disease from around the country to the event to hear about their experiences.

After attending sessions led by female clinicians on everything from drugs in the pipeline to women's role in the family, the 25 guests were encouraged to take what they learned and replicate it or adapt it to their own communities. "The aim is for them to talk about Parkinson's in general, and women and PD specifically," says Morgan, who was diagnosed almost six years ago. "We want to inspire activism. Get people in their community to write to their members of Congress and newspapers for more research support, educate the public, and encourage more women to participate in clinical trials so we have a patient population to study."

Difficulties Unique to Women

"Women are 22 percent less likely than men to be seen by a neurologist," says Morgan, referring to a 2011 study in Neurology about neurologist care in Parkinson's disease. Morgan herself was misdiagnosed for almost two years. "I was tested for absolutely everything—brain tumor, multiple sclerosis, Huntington's—even though I kept saying, 'I think I have Parkinson's,' because my mother had Parkinson's." It wasn't until Morgan went to a movement disorders specialist that she was finally diagnosed.

Women are also more prone to depression and dyskinesia (involuntary movements or tics), says Morgan, citing several recent studies in Neurology about sex differences in Parkinson's disease.

Sex-Specific Research

Morgan sees hope on the horizon, thanks to a recent mandate from the National Institutes of Health (NIH) for sex-specific research. "They mandated it right down to the cellular level," she says. Still, there's work to be done. The NIH studies "represent only 27 percent [of all studies]. We've got to impact Big Pharma to factor the other half of the population into research. Women are not just small men with different reproductive systems."

Looking Ahead

The first meeting was a "rousing success," says Morgan. The women are back in their communities, spreading the word and communicating relevant details about the various sessions. "Their feedback will dictate where the initiative goes next: a bigger conference, no conference, mini-conferences, public service announcements, pamphlets, booklets."

There's no turning back, says Morgan. "I hope it makes general neurologists think about sex-specific medicine or listen to their female patients and maybe recommend a movement disorders specialist, because women with PD present differently than men. I hope it makes clinical researchers seriously recruit women."

With her simple question four years ago, Morgan helped set in motion an initiative she's confident will deepen and expand. "Once you factor in half the population previously ignored, things change."