Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
Expert Speakers
Zain Guduru, MD
Kentucky Neuroscience Institute
George Quintero, PhD
University of Kentucky Brain Restoration Center
Kara Lee, PT, DPT, NCS
University of Kentucky
Laura Soldato
Bluegrass Parkinson’s Alliance
Andrew Welleford, MD
Kentucky Neuroscience Institute
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family members, friends and the community. Lunch will be served.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Get out and move with your community! Every dollar raised supports the Parkinson’s Foundation mission to make life better for people affected by Parkinson’s disease (PD). At Moving Day Community Walks across the country, we’re fighting Parkinson’s and celebrating movement — proven to help manage Parkinson’s symptoms — and we’re doing it together. The Moving Day Community Walk Program is a complement to the Parkinson’s Foundation Moving Day, A Walk for Parkinson’s. These walks are family-friendly and help the Foundation make life better for people with PD.
The Community Walk program offers volunteers an opportunity to organize a walk in their own community that does not have a Moving Day event. The program leverages the personal experiences and community leadership of passionate volunteers to promote Parkinson’s awareness and raise funds for the Parkinson’s Foundation.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Research Shows Genetic Variants Are More Common in People with Parkinson’s Than Originally Thought
New Parkinson’s Foundation research has found that genetic variants associated with Parkinson’s disease (PD) are more common than researchers previously believed.
Investigators in the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease study found that 13% of participants have a genetic form of PD — a significant observation compared to long-standing estimates. Results from the first 3.5 years of the study, which examined a broad North American cohort, was published in the peer-reviewed scientific journal Brain.
PD GENEration reached its goal of 15,000 participants this spring, ahead of schedule. Through the study, the Parkinson’s Foundation offers genetic testing for PD-related genes to any person with a confirmed PD diagnosis.
PD GENEration is the first of its kind to return results via live genetic counseling in English or Spanish. This enables participants and physicians to make more informed decisions about their care, including enrollment in gene-specific clinical trials.
Key PD GENEration findings published in Brain include:
7.7% of participants carried a GBA1 genetic mutation, 2.1% of participants carried a PRKN genetic mutation, and 2.4% of participants carried a LRRK2 genetic mutation. All participants were informed about their genetic status through the genetic counseling component of the program.
The positivity rate for a genetic variant is significantly higher for individuals with high risk. Those with young-onset PD, high-risk ancestry (such as Ashkenazi Jewish, Spanish Basque, or North African Berber), or a first-degree relative affected with the disease had an 18% positivity rate. The positivity rate for individuals without one of those risk factors was nearly 10%.
Many of these participants may qualify for precision medicine trials, showing the feasibility and importance of broadly offering genetic testing.
“We did not anticipate the high positivity rate for genetic mutations, specifically the nearly 10% having a positive result even without any known genetic risk factors,” said Roy Alcalay, MD, MS, Tel Aviv Medical Center, Israel, and the Department of Neurology, Columbia University Irving Medical Center, and lead principal investigator for PD GENEration. “Further, the speed at which participants enrolled in PD GENEration is a testament to the interest of people with PD to obtain data on their genetic status. Taken together, the positivity rate and the high interest in getting genotyped will hopefully translate to increased participation in observational studies and clinical trials toward therapies targeting these genes, simplifying precision medicine clinical trials in PD.”
Announcing the Next Phase
PD GENEration is moving into its next phase with support from the Global Parkinson's Genetics Program (GP2), a program of the Aligning Science Across Parkinson's (ASAP) initiative. ASAP's funding allows the Parkinson’s Foundation to accelerate the study’s impact by focusing on those who have been historically underrepresented in research.
Through wide-scale recruitment, the study is reaching a larger and more diverse community in the U.S., Canada and Latin America. The Parkinson’s Foundation aims to enroll an additional 8,000 participants, including 2,400 in Latin America, during the next phase of the study.
“PD GENEration is designed to be inclusive and accessible to all populations, with the goal of improving clinical outcomes for everyone. We are proud that the data we have collected through PD GENEration reflects the largest and most diverse North American cohort ever tested – and even though we reached our initial recruitment goal of 15,000 this spring, bigger things are on the horizon,” said James Beck, PhD, Parkinson’s Foundation chief scientific officer.
Studies have demonstrated that exercise has brain and body benefits for people with Parkinson’s disease. Exercise can help to improve Parkinson’s symptoms and help individuals do the activities they enjoy. Learn that there are benefits to movement at all stages of Parkinson’s and that it is never too late to start.
Speaker:
Jeanne S Feuerstein, MD, Assistant Professor of Neurology, Movement Disorder Specialist, University of Colorado, a Parkinson Foundation Center of Excellence
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Across the country and beyond, Parkinson’s Foundation volunteers are going out and making a difference in the lives of people with Parkinson’s disease (PD) and their loved ones. They help us spread awareness and resources to those who need it most.
The dedication from our volunteers is what makes the Parkinson’s Foundation what it is today. We are honored to recognize five exceptional volunteers at the national level, who each received a 2024 volunteer award.
Dr. Reversa Joseph - Great Lakes Chapter
Paul Oreffice Volunteer of the Year
“Volunteering for the Parkinson's Foundation is more than just a commitment; it’s a deeply personal mission. Each effort, whether it’s a presentation, a lecture, or a podcast, is a step towards improving the lives of those affected by Parkinson’s, honoring my father’s struggle, and ensuring that every patient receives the comprehensive, integrative care they deserve.”
“Along the way I have learned that there are many things, tips and tricks that the people who live the best with this disease share: exercise, positive thinking, being around others like themselves and giving back. The Parkinson’s Foundation is a great way to give back.”
As the somber saying goes, a parent should never have to bury their child. But in March 2023 Roland and Shelley Frankel had to do just that. Their son Graeme had been fighting Parkinson’s for five years and passed from an asthma-related emergency. To keep Graeme’s memory alive, the family decided to start a DIY fundraiser with the Parkinson’s Foundation.
“I really enjoy volunteering. I see it as another way to celebrate movement. I move my brain cells around; I motivate my soul to do good things; and volunteering moves forward the search for a cure.”
There are many powerful ways to get involved and support the Parkinson’s Foundation and our work to make life better for people with Parkinson's. Get started with our How You Can Help page. This page will give you options for volunteering, starting your own DIY Fundraiser, or even just donating to the cause.
You can also fill out a volunteer interest form to chat with our volunteer engagement team about how we can best put your skills to use. Help us bring life-saving information and resources to the hands of those who need them most.
There are many non-motor challenges associated with Parkinson’s disease that may not always be easy to discuss. With a focus on non-motor symptoms, this program will provide strategies for coping and talking about it with healthcare providers or loved ones.
Speakers:
Dana Sugar, MD, University of New Mexico
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Parkinson's research is important to finding better treatments and improving care. At this program, attendees will learn about how research shapes treatments, about care strategies for managing Parkinson’s symptoms, and what’s new in research.
People with Parkinson’s and their loved ones are invited to join us for a resource fair, exercise demonstrations, table activities, raffles and giveaways, and lunch.
Registration, parking and meals are provided at no cost to attendees, but registration is required.
Speakers: Anny Lin, MD, UW Medicine; Pinky Agarwal, MD, Evergreen Health
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Check-in and resource fair starts at 10 a.m.; Program starts 11:00 a.m.
Studies have demonstrated that exercise has brain and body benefits for people with Parkinson’s disease. Exercise can help to improve Parkinson’s symptoms and help individuals do the activities they enjoy. Learn that there are benefits to movement at all stages of Parkinson’s and that it is never too late to start.
Speakers
Erin Buckley, OTR/L
Central Virginia VA Health Care System
Acompañe a la Parkinson’s Foundation en nuestro evento educativo en español para explorar formas de mantenerse motivado cuando se vive con Parkinson y disfrute de una feria de recursos, baile, almuerzo, juegos, rifas, oportunidades de investigación in situ y mucho más.
Este programa es gratuito y está disponible para las personas con Parkinson, sus familiares, amigos, personas de apoyo y promotores de salud. Entre los presentadores estarán Natalie Diaz, MD, Pacific Neuroscience Institute; Ignacio Mata, PhD, Cleveland Clinic; Xavier Cagigas, PhD, UCLA; y Adriana Jimenez, Give for a Smile.
El estacionamiento y el almuerzo son gratuitos y hay una zona de actividades para niños disponible.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
Living with Parkinson’s can be challenging, but many resources are available to help you live your best quality of life. This program will provide important information about defining your care goals – both now and for the future – as well as guidance on accessing supportive services.
The event is free and is open to people with Parkinson's, their family, friends and the community. Registration is required as in-person seating is limited.
Thank you to our event partners, the Greater Fresno Parkinson’s Support Group and Move Up Health.
In this session we will talk together about how to build joy into your days, and introduce a joy meditation that you can do sitting quietly or on the go.
