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.
Parkinson’s brings ongoing change—not just physically, but emotionally and relationally. This session invites participants to explore how mindfulness can support us in being with what’s present.
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.
Dream. Believe. Achieve. Succeed. This is my mantra. I have these words mounted above a window in my home. I live by these words, even more so now, since I have been diagnosed with Parkinson’s disease (PD).
I am someone who dreams big, sets goals, puts a plan in place to achieve those goals and then works her tail off to ensure those dreams come true! With Parkinson’s, I’ve had to become more flexible, adjusting and modifying my goals and making changes as necessary.
Being a runner/walker all my life naturally led to some lofty goals. One example is my dream to complete a marathon (yup, that’s 26.2 miles) in all 50 states. About halfway through my journey, after finishing the Oh Boy Marathon in Connecticut, I caught a red eye to Los Angeles.
I arrived just in time for a quick shower followed by an intense shareholders meeting — in which I played an essential role as Chief Financial Officer. Walking (more like staggering) to the hotel after that meeting I noticed a slight tremor in my left hand. It was easy to write it off as stress or exhaustion from the previous day’s events.
A few more tremors, a couple of doctor visits later, and a DaTscan resulted in my PD diagnosis shortly thereafter. My goal to complete a marathon in 50 states did not change but I knew I would have to work harder to make it happen.
I found that out during a race around mile 20 when my gait and balance started to suffer. Other concerned racers asked if I needed help or medical attention. I thanked them for their concern and said, “This is what Parkinson’s looks like; help us find a cure.”
I made a shirt that says, “50 States Countdown Fighting Parkinson’s 1 mile at a time.” Now, when I wear it, people come up to me and say, “You’re such an Inspiration” or “I can’t believe you’re doing this” or “My Dad/Aunt/Brother/Friend…has PD, can I tell them your story?”
One of the reasons I joined Parkinson’s Champions is to team up with other athletes with PD and be part of a louder voice in raising awareness and advancements in the dream to end Parkinson’s.
For the past several years I’ve been doing everything I can to fight off Parkinson’s. In addition to putting in the long training miles needed for the marathons, I’ve added cycling classes, lap swimming, and line dancing to my exercise regime.
Through the Parkinson’s Foundation I’ve found a Rock Steady Boxing gym, ping pong tournaments and the annual Sole Support Walk that I participate in. My physical therapist uses the tag line “Exercise is Medicine” and we both believe that my rigorous workouts have helped me keep my Parkinson’s symptoms at bay.
Now I can say I am fully living my mantra Dream. Believe. Achieve. Succeed. I never lost sight of the dream! I firmly believed I could complete 50 marathons in 50 states. I achieved my goal, and on September 22, 2024, I succeeded in completing the Adirondack Marathon in NY with family, friends and a few hundred cheering fans to help me celebrate.
But the dream does not stop here. I will continue to fight Parkinson’s with everything in me, while doing my best to encourage and inspire others to do the same.
The referenced media source is missing and needs to be re-embedded.
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
Parkinson’s brings ongoing change—not just physically, but emotionally and relationally. This session invites participants to explore how mindfulness can support us in being with what’s present.
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.
Once upon a time, I started noticing a slight tremor in my right hand. My husband noticed that I did not move my right arm when jogging. I also suffered from frozen shoulder(s), insomnia, constipation, anxiety and fatigue for years.
Doctors continuously told me it was menopause related. Over time, the tremor became more noticeable, and my doctor suggested I see a neurologist, just to “be safe.”
I met with a movement disorders specialist — a neurologist with specialized training in movement disorders — and on November 11, 2015, she confirmed the diagnosis of Parkinson’s disease (PD). I will never forget that day. I was devastated and frightened.
At the suggestion of the movement disorder specialist, I signed up for the local young-onset Parkinson’s disease (YOPD) support group. I went to the first meeting and cried seeing how PD affects people. I cried every time I had to tell someone about the diagnosis. I cried thinking about how life had changed. I cried all the time. Through all this turmoil, my neurologist promised me that life was not over, but I had to take control, no matter how hard it got.
So, we took control. We retired early and moved to Florida. It is here that I signed up for Rock Steady Boxing. I am a fighter and have met the most amazing people at Rock Steady Boxing. I also attend spin classes and Pilates as part of my personal goal to keep on moving! It still felt like there was more I could do to change the trajectory of my life. Yep, there sure was. Enter Parkinson’s Foundation.
I connected with the Parkinson’s Foundation through Moving Day Chicago (my hometown). When we moved to Florida, I attended Moving Day Boca Raton and Palm Beach. I signed up for PD GENEration and three other clinical studies. I attended Foundation-sponsored seminars, which is where I met Karen Lopez and became involved in the local chapter.
Today I am a Parkinson’s Foundation Ambassador, a Board Member on the Fund Development team, and I was honored to be the Chair of a successful Moving Day Palm Beach 2024. I have also been part of our Regional Grant Review team for the past two years and I sign up for every relevant clinical trial.
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. Volunteering is really the most effective way to use one’s voice. Being awarded the Parkinson’s Foundation Community Service Award is the ultimate recognition of how important it is to advocate for ourselves and others affected by PD.
PD has changed my life. I am married to a host of medications governed by a time clock, and I deal with nasty and unpredictable symptoms, and it is truly humbling! However, living with Parkinson’s is also a true blessing in that it has given me the gift of friendship, support and has shown me the way to help advocate for others.
“You don’t look like Parkinson’s.” That’s what the second neurologist told me, after the first simply asked “Have you ever thought about Parkinson’s?” I can honestly say up to that point, I never thought about Parkinson’s disease (PD). Ever.
As a 47-year-old mother of two elementary school children, working full-time as a hospital administrator during a global pandemic, the idea of Parkinson’s seemed impossible.
I was diagnosed with young-onset Parkinson’s disease in 2023, officially. So, I did what any mom would do, I started posting about Parkinson’s on TikTok. Weird right? But that is where I met lots of amazing people just like me. Friends and mentors, who showed me that there is life with YOPD.
One of them, Mark Millow, suggested I volunteer with the Parkinson’s Foundation. I jumped at the chance to channel my enthusiasm with educating myself and others about the disease on social media, to something more tangible.
Shortly after completing my Parkinson’s Foundation ambassador training, I was appointed to Southwest Chapter board. It was at this time I decided to leave my career behind and focus on volunteering and spending more time with my family.
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.
I have a loving husband, amazing kids and live one day at a time. There is a lot to be grateful for. Gratitude is another secret weapon in fighting Parkinson’s.
I don’t care about small things anymore. Parkinson’s changed my priorities in many ways. It reminds you what is important in life. Friends, family, time spent outdoors, good food and lots of adventures — because no one knows what the future holds.
I love to travel and make magical memories with my kids before they become teenagers and don’t think I’m cool anymore. But they are very impressed when one of my social media posts goes viral.
I’m not grateful for Parkinson’s, but I do appreciate some of the things that came with it. I hate the disease, but I love the people with it.
The referenced media source is missing and needs to be re-embedded.
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
Parkinson’s brings ongoing change—not just physically, but emotionally and relationally. This session invites participants to explore how mindfulness can support us in being with what’s present.
The referenced media source is missing and needs to be re-embedded.
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
Parkinson’s brings ongoing change—not just physically, but emotionally and relationally. This session invites participants to explore how mindfulness can support us in being with what’s present.
The referenced media source is missing and needs to be re-embedded.
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
