As the President of the American Parkinson Disease Association (APDA), it has been an honor to participate in and partner with the World Parkinson Congress (WPC) over the years. I remember my first WPC in Montreal, Canada back in 2013, and how exciting it was to see all aspects of the Parkinson’s community coming together, collaborating, and learning from each other – it was inspiring. At each WPC since then, as I witness people with Parkinson’s disease (PD), medical professionals, researchers, and care partners come together, I am moved by the sense of connection that unites us all. The vast array of different perspectives, cultures, and lived experiences is part of what makes WPC an exceptional experience. The connection and the sense of community is palpable, and for all of us at APDA, and I’m sure many others, it really emphasizes the critical importance of focusing on improving the quality of life for people with Parkinson’s and their loved ones. My hope is that like us, others are carrying this feeling back to their exam rooms, their labs, support groups and so on, as a special reminder of why we are all doing the work that we do every day.

Addressing Today’s Needs
At APDA, we understand that while the search for a cure is of utmost importance—and we proudly fund cutting-edge research in that pursuit—people living with PD today cannot wait for future breakthroughs. They need and deserve comprehensive care, support, resources, and strategies to help manage their symptoms and improve their quality of life now. They need community and connection. This belief is at the heart of all the work we do at APDA. We work tirelessly every day to help people with PD and those who love them live life to the fullest despite their diagnosis. Through a wide range of programs, both virtual and in-person, we provide the knowledge, emotional support, and community connection that make a meaningful difference. We empower people with PD to take control of their health, make informed decisions, and seek out resources that help them thrive.

Education and Support: Empowering People with PD
The more you know and understand about the disease, the more confident you can be in the choices you make, the better questions you can ask your doctors, the more proactive you can be in your care. (Attending WPC is such a tremendous opportunity for people with PD and care partners to access the very latest information!) Throughout the year, across our network of APDA Chapters and Information & Referral Centers, we host in-person and virtual education programs to help the PD community learn more, and also to foster opportunities for people to meet others who understand what they’re going through.

For those newly diagnosed, our PRESS (Parkinson’s Roadmap for Education and Support Services) program offers an 8-week educational and support group led by a trained professional. Recently, we’ve piloted a new version of the program, PRESS ON, for those who are further along in their PD journey. Programs like these are essential for building community and empowering individuals to live well with Parkinson’s.

Expanding Our Reach to Underserved Communities
At APDA, we are committed to ensuring that everyone, regardless of background, has access to the information and support they need. We have worked hard to expand our reach to underserved communities, providing a wealth of educational materials and resources in Spanish and increasing the availability of information in Chinese (Mandarin, Simplified Chinese).

This effort ensures that language barriers do not prevent people from receiving the care and support they deserve and finding ways to make connections and build their PD community.

Addressing Intimacy and Connection: A Unique Resource
Creating meaningful connections with others can enrich your daily life. This is true for everyone, but can be especially helpful when navigating a chronic disease like PD. But it isn’t always easy, and when it comes to life with a partner, the relationship can often take a back seat to the busyness of life with PD. Recognizing this, we developed ParkinSex, a unique resource that offers practical advice to help couples reconnect and find intimacy in ways that are meaningful to them. This resource is a groundbreaking tool in the Parkinson’s community and reflects APDA’s holistic approach to improving quality of life by addressing emotional, relational, and physical needs.

Building Community and Emotional Support
Living with Parkinson’s can feel isolating, but no one should have to face it alone. APDA provides both in-person and virtual support groups for people with PD and their care partners. These groups foster a sense of community, allowing participants to share experiences, receive guidance, and connect with others who truly understand what they are going through. We also host Optimism Walks across the country that raise awareness and much-needed funds, but are also such an important opportunity for local PD communities to come out, come together, and share their experiences. I was just recently at our Long Island Optimism Walk in New York last weekend and loved seeing families and friends meeting and greeting each other – it was a perfect example of the connection and community we strive for.

The emotional support that comes from these connections is invaluable. Knowing that you’re not alone in your journey can make a world of difference, and we are proud to offer these resources and opportunities to help people with PD and their families build strong, supportive networks.

Commitment to Improving Lives, Every Day
At APDA, our mission extends beyond finding a cure. We are dedicated to improving the lives of people with Parkinson’s and their loved ones today, through education, support, and the provision of critical resources.

The World Parkinson Congress is a powerful reminder of the global unity within the Parkinson’s community. Bringing together people with PD, care partners, medical professionals, and researchers from around the world fosters collaboration, sparks new ideas, and creates an environment where innovation can flourish. But most importantly, it underscores the need to focus on the present—to ensure we are doing everything we can to improve the quality of life for people with Parkinson’s right now, even as we continue to work toward future breakthroughs.

At APDA, we are here for you, today and every day. We are proud to work alongside the global PD community to provide the care, support, and resources needed to help people with Parkinson’s live full, meaningful lives. Together, we are making a difference.

The American Parkinson Disease Association (APDA) is a Champion Partner of the World Parkinson Coalition®. They have been supporting the Coalition since inception in 2004. Follow them to learn more about their work and programs on 𝕏, Facebook and LinkedIn. For questions about programs mentioned above, please email ecaggiano@apdaparkinson.org

Ideas and opinions expressed in this post reflect that of the author solely. They do not reflect the opinions or positions of the World Parkinson Coalition®