Lauren Simmons, President of Parkinson’s Orange County (right) tabling at a local event
When Lauren Simmons was told she had young onset Parkinson’s disease (YOPD) at age 54, she left the doctor’s office with a life-changing diagnosis and a prescription, but “no hope and no guidance for resources.” She said, “It was absolutely horrible. I thought, ‘What do I do?’” Lauren, like so many others living with Parkinson’s, had to build her own map to the resources she needed. But the thing about Lauren, who is now one of PMD Alliance’s Ambassadors, is that she didn’t stop there. Once she had a map, she felt it was her responsibility to spread it. And so she did. She started a website, PDBuzz.com, that eventually became the organization Parkinson’s Orange County, and she spread her knowledge of local Parkinson’s resources to her community. Seven years later, her impact is impossible to miss.
This is the story of our ripple effect—the way one person’s knowledge, compassion, and support alights another. We won’t stop until everyone in the movement disorders community is educated, empowered, and inspired.
BJ Bement, like Lauren, is one of our ambassadors who was diagnosed with Parkinson’s young. It had taken 10 months and 100 appointments to finally hear the words, “You have Parkinson’s.” He was 44. Like Lauren, BJ has sparked a ripple effect in his Baton Rouge, LA, community, generating deep connections and lighting up others with resources.
But it didn’t start that way. After BJ’s diagnosis, he joined a Facebook support group. “Everything was online—all text, no pictures, no videos,” he said. Four months into his diagnosis, the leader of the Facebook group invited him to join Hill Day, their advocacy trip to Washington, DC. “When I was heading up to DC,” BJ said, “I hadn’t met any of them in person. I had 16 hours on the road just thinking about it. I was going to see all these people way beyond where I was in my disease. I was newly diagnosed and, frankly, I really didn’t want to see it.” He worried that rather than inspiring him, connecting in person with the Parkinson’s community would throw him into fear for his future.
Lauren had a similar experience. When she came home from the doctor without resources, her husband started researching. He found a local Rock Steady Boxing class, a workout designed for people with movement disorders. At the time, Lauren hadn’t met anyone, especially anyone her age, with Parkinson’s. “I cried in the car on my way there,” she said. “I took a Xanax beforehand.”
Turns out, Lauren and BJ had nothing to worry about. Their first experiences with the Parkinson’s community lit them up. “I went into the gym that day,” Lauren said. “A year later, I was certified to coach it.” She went on, “They welcomed me like family. That first day, one of the ladies said, ‘You’re going to be okay.’ That changed everything.” In fact, rather than feeling deterred by the people with Parkinson’s around her, she was inspired: she saw people with Parkinson’s living well and, as she said, quite literally “kicking butt.” “It was nice to see the possibility of what my future could be.”
BJ felt that, too. “From the very outset,” he said, “I saw people much further along, but still doing all these wonderful things. I thought, ‘They’re not letting it limit them. Why should I?’ From that moment, I decided I was just going to go until I can’t go anymore.” He’s still going strong.
When Eric Aquino, now one of our ambassadors, was diagnosed with YOPD two weeks before his 40th birthday, he wasn’t surprised. His grandmother, a “strong-willed, feisty little woman,” also had Parkinson’s, and he had helped take care of her. “What did come as a surprise,” he said, “was the lack of local resources for the Parkinson’s community in my area.” At the time, Eric was President of a nonprofit organization that supported people with cancer. In the cancer community, he knew there were support groups and exercise programs—and he assumed he would find the same for Parkinson’s in his local Bethlehem, PA, neighborhood. Instead, he found a sole support group at one local hospital. The other hospital in the area “didn’t have anything.”
Like Lauren, he decided not only to build the map, but to share it. He launched the Gray Strong Foundation, a nonprofit committed to raising awareness for locals with Parkinson’s, including about the power of exercise and social connection.
A few years ago, Eric saw an advertisement for PMD Alliance’s ALL IN! Summit, a national gathering of community and support group leaders to build bonds, challenge preconceived notions, and generate new ideas. He was hooked. “We have the same goal,” he said about PMD Alliance. “We both recognize the need to bring resources to the community. They’re doing it on a national level, supporting people like me on the local level.” Another ripple effect.
Since then, Eric and the Gray Strong Foundation have partnered with PMD Alliance to bring PMD Alliance’s signature in-person Renew! Retreat® to his local Bethlehem community. These retreats are a chance for people living with a movement disorder and their care partners to learn, as Eric says, “from their perspective.” “We start the day together,” Eric said, “then separate into two rooms: one for people with the disease and one for their families.” In particular, he’s noticed the profound impact this has had on care partners. “It’s a place for them to come and relax and unload the things that are weighing on them. And to learn how to best support themselves on this journey.” Care partners can feel at ease knowing their loved ones are supported, with volunteers—often physical therapy students—there to help people with movement disorders move around safely. The Gray Strong Foundation is preparing to host their third retreat. This year’s theme is “Reclaiming You,” all about mental wellness on a Parkinson’s journey.
Eric is not the only one who has been inspired to bring PMD Alliance national events to their community, creating a powerful local ripple effect. BJ and Lauren have both done the same. This past December, Lauren and her team organized a Renew! Retreat® in Orange County, CA. She said, “I really, really feel like the more educated you are, the healthier you’ll be.” In Louisiana, BJ has partnered with a local physical therapy practice, Moreau Physical Therapy, to bring PMD Alliance’s Get Out series to Baton Rouge, a series centered around social connection and movement-boosting games. “Our goal,” they shared, “is to create a space where the focus is on joy, camaraderie, and a shared commitment to wellbeing—not just on the challenges of Parkinson’s.” His local partner, Jennifer Marino of Moreau Physical Therapy, added, “We’re thrilled to see community members stepping out of their homes, laughing together, and engaging in activities that both entertain and enhance balance and dexterity.”
BJ Bement (center) and Eric Aquino (right) with Larry Gifford at the 2024 ALL IN! Community & Support Group Leader Summit
The magic of the networks we’re building together is that ripple-starters like Lauren and BJ and Eric are finding each other and amplifying their impact. BJ and Lauren, who have been involved with PMD Alliance’s virtual In-Sync Support Group Leader Roundtables for years, are getting ready to launch an In-Sync After Hours Facebook group. “Every month, PMD Alliance hosts a virtual roundtable for support group leaders,” BJ explained, “but not everyone can participate. We wanted a forum for people who are working or can’t come during that time to interact and get information.”
“In the forum,” he insists, “we’re here to have fun, to connect,” and to delve into group leaders’ most pressing questions. Do you feel bogged down? Do you need ideas? What kind of activities are you doing? How do you deal with that one difficult person in the group? “It’s an open forum for just about anything,” he said.
What began as a personal quest to find resources for Lauren, BJ, and Eric has turned into a powerful commitment to community, with waves rippling from neighbor to neighbor, family to family. “In a matter of five or six years,” Eric said, “we went from having one local support group to six. That alone has been tremendous.” They have built spaces for people to feel seen, to share advice, and to remember they are not alone. And they have empowered local individuals with Parkinson’s to become leaders, launching their own groups.
Parkinson’s is not going away. The number of people being diagnosed each year is rapidly on the rise. In Orange County, Lauren has seen her and her team’s work begin to truly reach the need. “This past week,” she said, “we had another [in-person] workshop. We had over 80 people in attendance, over 15 vendors and sponsors. It was a huge community event, which came from making a small website seven years ago. It has grown tremendously. It has helped so many people.”
BJ continues to think outside the box, building partnerships at every opportunity. He connected with the local YMCA and, together, they launched Pedal for Parkinson’s and Ping Pong for Parkinson’s. Now, whenever the YMCA hosts a health screening, BJ and his team are invited. Later this month, they’ll host a brain screening there, with screenings performed by LSU School of Kinesiology students. A movement disorder specialist will be on hand, ready to connect with anyone who needs to take the next step based on their screening. “We’re working in North Baton Rouge, too,” BJ said, “in underserved areas. Parkinson’s doesn’t select a race or gender, but at most of our events, only caucasian people are showing up. We want to make sure everyone in Baton Rouge has the same opportunities we do.”
When Eric was first diagnosed with young onset Parkinson’s disease, he wasn’t shocked. He expected the same experience as his grandma. But this journey as a ripple-starter has shown him that “this is not my grandmother’s disease.” There have been revolutions in research in the past twenty years. New treatments are being approved by the FDA. And the proliferation of resources like exercise and social connection—thanks to people like Eric—has been a game changer.
Indeed, there is life-changing truth in BJ’s mantra: “If we reach one person each time we do something, then we’ve made a huge difference.” One ripple at a time, we are changing what it means to live or love someone with this disease. When we think about what’s next, we know that, together, anything is possible.
