The Heartbreak and Motivation Behind Parkinson’s Advocacy
By: Erika Ganong, Vice President, National Parkinsons Institute
My journey with Parkinson’s advocacy is deeply personal, shaped not only by my own experience with Essential Tremors and Dystonia but also by the incredible people I’ve met along the way. Living with a movement disorder has given me a unique perspective on the struggles that individuals with Parkinson’s face daily—the physical limitations, the emotional toll, and the fight to maintain independence. But beyond the challenges, I have witnessed resilience, strength, and an unwavering spirit within the Parkinson’s community, which has fueled my commitment to making a difference. This firsthand experience has given me a profound understanding of the challenges faced by those living with Parkinson’s. Over the years, I’ve worked alongside neurologists, nurses, and therapists, learning not only about my own condition but also about the pressing need for greater awareness, support, and specialized care for the Parkinson’s community.
Yet, the reality of this disease is harsh. Every time we lose a member of our Parkinson’s family, it’s a gut-wrenching reminder of why we fight so hard. Their absence leaves a void that words can’t fill, and the grief never gets easier. Each loss is not just a statistic—it’s a person, a friend, someone who showed up to our events, shared their story, and fought with everything they had. These moments of heartbreak only strengthen our resolve. They remind us why we must keep pushing, why we must continue advocating, and why our work is far from over. My journey with Parkinson’s advocacy is deeply personal and fueled by both my own experiences and my desire to create meaningful change.
As the Vice President of the National Parkinsons Institute, I’ve been able to turn my passion into action. From organizing community events like the Walk to End Parkinson’s and the Red Tulip Gala to launching programs such as Dance for Parkinson’s, Pickleball for Parkinson’s, and a multitude of Support Groups, I strive to create opportunities that empower, connect, and support those affected. Whether it is leading support groups, advocating for more movement disorder specialists, or fostering collaborations with other organizations, our goal is to ensure that people with Parkinson’s and other Neurological conditions have access to resources that improve their quality of life.
Advocacy goes beyond fundraising and events—it’s about amplifying voices, educating the public, and breaking down barriers. I am committed to making sure that individuals with Parkinson’s, their caregivers, and families feel heard and supported. Whether it’s through my work in the community, speaking engagements, or my newly launched online store dedicated to Parkinson’s awareness, I want to continue spreading knowledge and fostering a sense of unity. As I look ahead, I remain dedicated to pushing for greater advancements, better care, and a future where no one has to navigate this journey alone.
This pain is what drives us, our leadership, and the entire National Parkinson’s Institute to push forward in building our future—a state-of-the-art health campus that will provide critical resources, therapies, and a community for those battling this disease. It is our end goal, our mission, and our promise to those we’ve lost and those still fighting. We refuse to accept the status quo. We refuse to let people navigate this journey alone. Every event, every program, every dollar raised is a step toward that vision, ensuring that no one with Parkinson’s ever feels forgotten, unsupported, or without hope. We will build this, not just because we want to—but because we have to.