PD Advocate, Creator of the PD Movement Lab

“The WPC is a wonderful event. No other conference that I know of has the same energy, spirit, and attendance by so many who are affected by the disease. It is continuously exciting. Everyone who has PD should try to go at least once (the next one will be in Quebec City in 2029). All that being said, there is some room for improvement.

1. First, it’s impossible to see and hear everything you’d like to know and experience. Knowing that, it’s helpful to plan ahead to select the experiences that are most important to you. If you go with a friend, it might be helpful to take different courses and share what you learn at meals or at the end of the day.
2. Some stages of the disease seem to receive more attention than others, thereby suggesting that some people’s PD is more worthy of consideration. It seems that the more your disease progresses, the less there is available for you to engage in. What I feel we really need is support for programs in PD Centers scattered around the world that offer different kinds of activities catered to all the different ability levels, and that these local places have a cafe and a place for people to socialize.
3. I feel that the science of the disease gets a lot more attention than the science of life, and that some re-balancing is in order. I was disappointed that dance and several other modalities weren’t mentioned in the discussions and research on exercise programs. Dance should be recognized for the particular contribution it makes.
4. For the future, one area that I think could use improvement is the attention given to falls. Breaking something is a fear we all have, and a well-founded one, given the statistics on death associated with lack of recovery.

This time, I had more time to network, which was useful; patients and professionals have access to each other, unlike any other conference. People are very open, and it’s always comforting to be among so many others who share the same physical challenges. No need to explain. And the anticipation of being able to finish and perform the dance we did for the opening night ceremony gave us a great push off for the conference. I was honored to be a part of the opening of this year’s event by choreographing a dance and to launch the conference off in such an artistic and meaningful way.”

Co-Founder of stoPD Boxing

“My experience at the World Parkinson Congress was deeply meaningful and energizing. Serving as a Scientific Ambassador was an honor and a reminder of the power of bringing scientists, clinicians, people with Parkinson’s, care partners, and advocates together in one community.

“A major highlight was the incredible response to the sessions I participated in and co-chaired on women and Parkinson’s disease, where the audience engagement and feedback made clear how urgently this topic needs more attention. I was also proud to see students and scientists from my lab present their posters, to share our work through interviews focused on women and PD, and to discuss exciting new science with colleagues from around the world.

“Beyond the science, it was wonderful to reconnect with friends, make new ones, and feel the extraordinary support and momentum of the Parkinson’s community. I left inspired, grateful, and more committed than ever to advancing research that addresses the real needs of people living with Parkinson’s.”

Program Coordinator and Yoga instructor

“This is my second WPC and I’m so grateful to be a part of this amazing community. Not only to learn from the medical experts, but to learn from the experts who are living with PD—that to me is truly the most powerful part of the conference. Seeing films and artwork by and about the Parkinson’s Journey along with meeting people from around the world all with the same goal: to improve the quality of life, find a cure, and to discover new ways to support Parkinson’s clients and those who love them. As the program coordinator, I went with my mind focused on what I can bring back to my community/my students. My top ah-ha moments:

• Changes in how research is happening. Dr. Tom Foltynie, from the UK, shared that international researchers are working to develop cohesive criteria for their studies and are SHARING control groups so that multiple drug studies can be conducted simultaneously using a shared control group. This expedites research; if a drug isn’t showing meaningful effects, they can try a different drug without having to create a new control group. This will save years in trials and research.
• Motivation around Movement. Jimmy Choi has been living with PD for over 23 years. He talked about his journey with Parkinson’s, which led him to compete on American Ninja Warrior. Diagnosed at 27, he was overweight and walking with a cane. Seven years into his diagnosis, a fall led him to decide he wanted a different relationship to his PD. He started by walking with his cane and trying each time to take a few more steps. He wanted to walk without his cane. Each goal was a little out of reach: walk a 5K, then a 10K, then a half marathon. He trained, pushing himself outside of his comfort zone, but he kept at it, and each success led to a new goal. He wanted to be around for his young kids and knew that he had to do something every day. He followed the science, which recommends cardiovascular training, and continued to build strength. He does exercises that support activities of daily living specific to him, so he can have more time with friends and family.
• Getting to Present and Participate: I was honored to be a dancer in Pamela Quinn’s opening number. To be a part of her creative journey and expression was a gift. Getting to teach a Yoga + Qi Gong class—sharing what I teach weekly at the JCC to a large audience and to receive incredible feedback—had me in tears. I don’t always think that what I do is “enough” and this week reminded me that small pebbles can make big waves.

Art:

• This Is Parkinson’s 10 Years Later (detteerparkinson.no/en). View this amazing art exhibit to discover images and stories from people living with PD. The initial project was launched 10 years ago, and the artist revisited the interviewees to see what life is like now.

Books:

• My Fight with PD: A Neurologist with Parkinson’s Disease by David Blacker
• Being Well with Chronic Illness, by Kat Hill
• Finding Your Flow: Live Well with Parkinson’s For People Living with Parkinson’s and the People Who Love Them. By Joanne Faulkner + David Millard
• Parkinson’s Disease + the Law: Rights, Policies and Protections by George Ackerman, Dawn Howard + Kim Jacobsen
• The Parkinson’s Path: Your Guide to Finding Hope, Happiness, and Meaning on Your Journey with Parkinson’s Disease by Lianna Badran Marie
• Parkinson’s: Living Well Naturally with PD, a Naturopathic Functional Medicine Guide, Max Tomlinson, ND
• Oh Crap! It’s Parkinson’s by Sara Whittingham
• Living Parkinson’s by Steve Yellen

Products:

• NUSHU X (magnes.ch/nushu-x/ or info@magnes.ch) is a smart shoe that utilizes advanced sensors and AI. It provides real-time vibrational feedback to support smoother, more confident walking. You can track your walking pattern and health using NUSHU X to enhance mobility and independence.
• Playlist for Parkinson’s (Playlist4Parkinsons.com) shares playlists of songs people with Parkinson’s have used for motivation, relaxation, and helping people reconnect with their musical selves. We can show you which types of songs will help, and how, and will share with you music that other people with Parkinson’s have used to improve their movement and mood. And you can create/share your own playlists.
• NeuroFiber (neurofiberhealth.com) was founded by a food scientist and pharmaceutical executive who saw a friend living with PD face gut health issues. Created with 11g of fiber from diverse, plant-based ingredients, designed to nourish your gut and reduce inflammation. Clinically tested to reduce gut inflammation, constipation, and cholesterol.

Research Study Opportunities:

• Newlark.com – This study will evaluate the safety and efficacy of NEU-411, an investigational treatment for a genetically-defined subset of people with Parkinson’s Disease.

Speech Therapy:

• SPEAK OUT! Therapy Program (ParkinsonsVoiceProject.org) was developed by Parkinson Voice Project, a nonprofit organization helping people with PD and related disorders regain and retrain their speech and swallowing.

Pamela Quinn
Pamela Quinn is a professional dancer and PD Coach who has had Parkinson’s Disease since 1996. Her personal experience of PD combined with her keen knowledge of the body derived from her dance training gives her a unique position from which to analyze patients’ physical functioning and to imagine creative solutions to the problems posed by PD.

Interested in finding as many ways as possible to counter PD’s challenges, she experiments with a wide range of approaches: cuing systems, music, dance, athletic drills, imagery, and physical strategies. Together these offer concrete tools that improve her students’ mobility and lives.

Her innovative approach has earned widespread recognition, making her a sought-after teacher and speaker in the U.S. and abroad. She has presented at leading medical institutions and at major PD gatherings worldwide, including the 2nd–6th World Parkinson’s Congresses, the 2nd Parkinson’s Congress of Japan, the 2015 Milan EXPO, the 2016 American Congress of Rehabilitative Medicine, and the 2021 Davis Phinney Foundation Victory Summit.

She has been featured in many media outlets, including a CBS Evening News profile and dedicated chapter in Jon Palfreman’s book Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease. She has choreographed a series of award-winning videos and performance pieces using dancers with and without Parkinson’s, and was the Parkinson’s consultant to actor Christopher Walken on the critically acclaimed film A Late Quartet. In 2019 she was named a Dance/USA National Fellow for her use of dance in service of social change.

She loves her students, whose energy keeps the Lab inventive, rigorous, and alive. pdmovementlab.com

Roberta Marongiu, Ph.D.
Dr. Roberta Marongiu, Ph.D., is Assistant Professor of Genetics and Neuroscience in Neurological Surgery at Weill Cornell Medicine. She received her Ph.D. in medical genetics and neuroscience from the Sapienza University of Rome and the University of California, San Diego.

With 20 years of experience advancing translational research in neurodegenerative diseases to bridge the gap between fundamental neuroscience discoveries and clinical interventions for Parkinson’s disease and Alzheimer’s disease, her multidisciplinary expertise spans from molecular genetics, viral vector-mediated gene therapy, molecular and behavioral neuroscience, to the use of rodent models of neurodegeneration, and human clinical data.

Her research contributions to Parkinson’s disease include the identification of the first PINK1 pathogenic mutations; evidence of a direct link between mitochondria, autophagy, and the pathogenesis of Parkinson’s; and the identification of the p11 gene as the first potential target for treating both PD motor symptoms and dyskinesia.

Her lab research focuses on using novel genetic, viral, and animal model tools, and machine learning approaches to identify the molecular mechanisms underlying the role of sex and menopause on brain disorders, including Parkinson’s disease and Alzheimer’s disease.

Beyond the lab, Dr. Marongiu is also a strong advocate for exercise and healthy living as pillars of brain health. She is co-founder and president of stoPD (Support and Training to Overcome Parkinson’s disease), a Bi-Coastal 501(c)(3) nonprofit organization devoted to bettering the quality of life for people living with Parkinson’s disease and their families. stoPD provides support, intense exercise programs, arts programs, and education to encourage proactivity and a positive shift in perspective toward the future. stoPD’s strategic intervention is integrated and personalized to improve self-confidence and social interactions. stop-pd.org

Whitney Chapman, MFA
Whitney has spent more than 35 years helping people care for their bodies and minds through movement practices rooted in yoga, Pilates, restorative wellness, and mind-body connection.

Her approach is shaped not only by decades of professional training and teaching experience, but also by a lifelong understanding of the importance of meeting people where they are. Throughout her career, Whitney has focused on wellness programs for special populations. Her experience includes developing hospital-based fitness programs, namely Boone Hospital’s Cardiac Rehabilitation program and Yoga for Women with Cancer classes. Whitney was the first yoga instructor invited to attend the National Parkinson’s Foundation Allied Team Training, going on to create an internationally recognized yoga program for individuals living with PD. She leads weekly classes at the Marlene Meyerson JCC Manhattan and has been invited to teach at the Ben Rubin Parkinson’s Program at the JKC and for two World Parkinson’s Congresses.

Whitney is the Program Director at The Wechsler Center for Modern Aging + Program Coordinator for Parkinson’s Wellness at the Marlene Meyerson JCC Manhattan. As the Program Coordinator for Parkinson’s Wellness at the JCC, she welcomes families into the Parkinson’s Wellness community and runs the daily operations of the program. Alongside Senior Health and Wellness Director Caroline Kohles, she collaborates on the development and growth of this program and works with Senior Director Susan Lechter of The Wechsler Center for Modern Aging to integrate the program participants into the larger JCC Community.

In addition, Whitney currently teaches at Equinox, the Marlene Meyerson JCC Manhattan, and privately. Her goal is to help people feel more connected to themselves, more comfortable in their bodies, and more supported through every stage of life. whitneychapman.com