IN THE SPOTLIGHT: Anita Dust

Parkinson’s advocate on troubling disease

Anita Dust almost threw it away. It was just another piece of mail, a small educational flyer listing the early signs of Parkinson’s disease. Like most people sorting through a stack of envelopes, she was seconds from tossing it in the trash. But something caught her eye. “I glanced at it and thought, ‘Oh, I have one of those. Maybe I should look at this,’” she said. “Then I realized I had four out of the ten signs.” That moment in 2022 changed the course of her life. Within a year, after follow-ups with her physician, a neurologist and ultimately a movement disorder specialist, Dust received a diagnosis: Parkinson’s disease. For many, that process takes far longer.

Parkinson’s disease is notoriously difficult to diagnose. There is no single test, and symptoms often appear gradually, presenting differently from person to person. That variability can delay recognition for years. “Some people go five, ten years without a diagnosis,” Dust said. Her early diagnosis, sparked by a simple awareness flyer, put her in a rare position; one that allowed her to begin addressing the disease sooner rather than later. That timing matters. Early diagnosis creates a window for patients to begin managing symptoms with medication, therapy and lifestyle changes, and particularly exercise, which is now considered one of the most important tools for maintaining function and quality of life.

“One of the main things people should do is exercise,” Dust said. “It’s the ‘use it or lose it’ idea.” She now follows a structured routine that includes strength training, yoga and Rock Steady Boxing, a non-contact boxing program designed for people with Parkinson’s that emphasizes coordinated, high-intensity movement. The program, founded in 2006, is built on the idea that deliberate, repetitive movements, especially those that engage both sides of the body, can help slow physical decline. The impact, she said, is tangible. “If I miss a few days, I can feel it,” she said. “I’m ready to get back.”

Despite being the fastest-growing neurological disease in the world, Parkinson’s remains widely misunderstood. More than 10 million people globally are living with the disease, including over 1.1 million in the United States. Each year, approximately 90,000 Americans are newly diagnosed – a sharp increase from about 60,000 annually just a decade ago, representing roughly a 50 percent rise in new diagnoses in just 10 years. By 2050, that number is expected to reach 25 million worldwide. “It’s growing faster than people realize,” said Larry Dust, Anita’s husband.

Even more concerning, the disease is appearing at younger ages. Once considered a condition that primarily affected older adults, Parkinson’s is now being diagnosed in people in their 40s and even 30s. Actor Michael J. Fox was diagnosed at 29. Researchers increasingly point to a combination of factors behind the rise, including environmental exposures such as certain pesticides and industrial chemicals, alongside aging populations. Yet despite its rapid growth, Parkinson’s research funding lags behind other major diseases. Federal funding for Parkinson’s research remains significantly lower than that allocated to conditions like breast cancer or HIV/AIDS. For the Dusts, that disparity reflects a broader lack of awareness.

“People don’t realize how big this is,” Larry said.

For Anita, the shift from patient to advocate began about a year after her diagnosis, when a coach at her boxing program handed her a book titled “Ending Parkinson’s Disease.” One chapter, in particular, stood out. It described how diseases like polio, HIV/AIDS and breast cancer were transformed not just by scientific breakthroughs, but by public-awareness campaigns that unified people behind a recognizable symbol – the March of Dimes, the red ribbon and the pink ribbon. “It talked about how diseases like polio, AIDS and breast cancer changed because of awareness campaigns,” she said.

Parkinson’s, she realized, had a symbol too: the red tulip. Officially adopted as the global symbol of Parkinson’s disease in 2005 at the World Parkinson’s Conference, its origins trace back even further to a Dutch horticulturist living with Parkinson’s, who developed a red and white tulip in honor of Dr. James Parkinson, the physician who first described the disease in 1817. Despite that history, the symbol remains largely unknown outside of those directly affected by the condition. “Practically no one knows that,” she said.

So she decided to change that.

What began as an idea has quickly grown into a grassroots effort. The Dusts launched the Red Tulip Campaign with a clear mission: to make the red tulip as recognizable for Parkinson’s as the pink ribbon is for breast cancer – raising awareness, increasing funding, accelerating research and ultimately working toward prevention and a cure. Their approach is intentionally collaborative. “We’re not competing with other Parkinson’s organizations,” Larry said. “We’re trying to amplify them.” Unlike traditional nonprofits, the Red Tulip Campaign directs 100 percent of its fundraising back to established Parkinson’s organizations, including research foundations and programs that support quality of life. Their focus is awareness because awareness, they believe, drives everything else. “If the red tulip becomes as recognizable as the pink ribbon, all boats will rise,” he said.

That message is already gaining traction. The campaign’s first public event, a Parkinson’s Foundation walk in Indianapolis last fall, drew immediate attention. “Everyone who came up said, ‘I didn’t know the red tulip was the symbol,’” Anita said. Since then, the effort has expanded through community events, social media and word of mouth. Local doctors’ offices near the Dusts’ off-season Indiana home have begun distributing educational materials. Individuals living with Parkinson’s have reached out to get involved. Strangers have contacted the Dusts to organize fundraisers or request campaign materials. “It’s small, but it’s catching on,” Anita said.

At the heart of the campaign is a simple but powerful idea: awareness can lead to earlier diagnosis. The same type of educational flyer that caught Anita’s attention is now central to their outreach. The Dusts are working to place materials outlining early signs of Parkinson’s in doctors’ offices, clinics and healthcare systems, places where subtle symptoms might otherwise go unrecognized. Nearly 40 percent of people with Parkinson’s do not recognize early symptoms, and delays in diagnosis can lead to delayed treatment and worse outcomes. “If I had thrown that away, I would never have suspected anything,” she said.

For many patients, receiving a diagnosis – even one as serious as Parkinson’s – can bring a sense of relief. That clarity allows people to begin taking action, whether through medication, therapy or lifestyle changes that can help preserve independence and function.

Parkinson’s is a progressive neurological disorder that affects movement, coordination and, in many cases, speech. But its presentation varies widely. “If you know one person with Parkinson’s, you know one person,” Anita said. For her, changes in her voice have been one of the most noticeable symptoms. Others may experience tremors, stiffness, balance issues or cognitive changes. While there is no cure, treatments can help manage symptoms and improve quality of life. Medications, many of which have remained largely unchanged for decades, are often combined with exercise and therapy. In some cases, patients may undergo advanced procedures such as deep brain stimulation. Even so, progress has been slower than many patients and advocates would like. “Anything that looks like a step forward is major news,” Larry said.

The Dusts believe that change begins with visibility. Their goal is not only to raise funds, but to reshape how Parkinson’s is understood by the public, by policymakers and by the medical community. That includes advocating for increased federal research funding and stronger support for research initiatives that have already been approved but remain unfunded or underfunded. “It doesn’t do any good without the funding,” Anita said. Just this week the Dusts returned from the Parkinson’s Policy Forum in Washington, DC. They are also working to bridge gaps between different parts of the Parkinson’s community, from research, to patient care to support services. “There’s a lot of silos,” Larry said. “Something needs to elevate all of them.”

In Boca Grande, where the Dusts have spent decades building family memories, that work continues to take shape. From local fundraisers to broader outreach efforts, from educational materials to growing digital campaigns, the red tulip is beginning to appear in more places and in more conversations. It is still early, but so was every major awareness movement once.

April is Parkinson’s Awareness Month, and the Dusts hope that in the years ahead the red tulip will become a widely recognized symbol, one that brings people together, drives action and accelerates progress against a disease that continues to affect millions worldwide.

“This has caught fire faster than we expected,” Anita said.

And it all started with a piece of mail that nearly landed in the trash.

More information about the Red Tulip Campaign, including ways to get involved, can be found at  redtulipforparkinsons.org.