PDGENEration: Mapping the Future of Parkinson's Disease is transforming the landscape of Parkinson's research while empowering individuals with knowledge. This webinar will cover an overview of the PD GENEration study, including its mission and the exciting progress made so far. We will also provide a discussion of the future of PD GENEration and insights from a participant panel, featuring their personal stories and the impactful actions they have taken based on their genetic results.
Speakers
James Beck, PhD
Chief Scientific Officer, Parkinson's Foundation
Jennifer L. Verbrugge, MS, CGC
Licensed, Certified Genetic Counselor
Indiana University School of Medicine
Department of Medical and Molecular Genetics
Hereditary Genomics Division
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
I am running the 2025 Boston Marathon for the Parkinson’s Foundation through the generous support of Team Abbott because of a deeply personal connection to Parkinson’s disease (PD) and a lifelong commitment to raising awareness and funds for research.
Ten years ago, my father was diagnosed with Parkinson's disease, an event that forever changed the course of our lives. It marked the beginning of a journey that has been challenging but also transformative.
As a primary care doctor, I witness the impact of Parkinson’s every day through my patients, many of whom struggle with the same symptoms that my father faces. I am driven to take action, not just as a caregiver to my dad, but as a physician, advocate and athlete with a mission to make a tangible difference in the fight against Parkinson’s.
Parkinson’s disease is a progressive neurodegenerative disorder that affects movement, causing tremors and rigidity. While the symptoms are debilitating, what is often overlooked is the emotional and psychological toll it takes on both patients and their families. Watching my father navigate these challenges has fueled my passion to raise awareness about the disease, promote research into better treatments, and ultimately find a cure.
Running in the Boston Marathon is not just an athletic challenge for me; it is a personal commitment to honor my father’s resilience and to support the Parkinson’s Foundation in its efforts to improve the quality of life for people living with this disease.
In 2021, I ran the Philadelphia Marathon for the Parkinson’s Foundation as a Parkinson’s Champion and was able to raise $10,000 for the cause. That experience was incredibly rewarding, not only because of the financial support I was able to provide but also because it helped me connect with others who were similarly affected by Parkinson’s. I learned firsthand how powerful a community can be when it comes together with a shared purpose.
That race reignited my drive to do more, to be part of something bigger than myself. My goal now is to raise $100,000 over the course of my life for the Parkinson’s Foundation. This is not just about hitting a financial target — it is about making a real and lasting impact in the lives of those battling Parkinson’s and supporting the critical work of the Foundation.
Running the Boston Marathon is a way for me to push my own limits in honor of those who face the challenges of Parkinson’s every day. Each mile I run will be a reminder of the obstacles my father faces, the struggles of my patients, and the countless others affected by this disease.
It is my hope that my efforts inspire others to join this cause and to remember that together, we can make a difference.
Run as a Parkinson’s Champion today! Help raise funds and awareness for the Parkinson’s Foundation while competing in some of the world’s most popular endurance events.
Check-in and Resource Fair start at 9 a.m.
The program will be held from 10a.m. - 12:30 p.m.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
This program is free. Lunch will be served.
Expert Speakers
Karuna Dewan, MD, FACS LSU Health Shreveport, Ark-LA-Tex Center for Voice, Airway and Swallowing
Sarah Quintana, MS, L-SLP, CCC-SLP LSU Health Shreveport, Ark-LA-Tex Center for Voice, Airway and Swallowing
From Fear to Care: How to Address Parkinson’s Hospital Risks
People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital. It is important for all people with Parkinson’s to be aware of the risks, prepare ahead of time and know how to advocate for their needs while in the hospital.
To raise awareness of how quickly things can go wrong, we highlight three hospital experiences from people with Parkinson’s below. The Parkinson’s Foundation is committed to helping people like Cindy, Ron and Julie, receive better hospital care. Get to know them and their stories. We’re thankful for their willingness to share their share to help educate and empower our community.
Cindy’s Story
Cindy prepared for a routine surgery. An avoidable medication interaction still caused hallucinations.
I recently had a total knee replacement. Beforehand I did everything I was told that was needed to prepare. I had gone to my primary doctor and my neurologist to get clearance and felt calm going into surgery.
My neurologist wrote notes on what medications I should not take. But when I went to the hospital for my surgery, the nurse doing my intake didn’t know I had Parkinson’s disease (PD). Not one person I spoke to had looked at the notes my doctor sent. I was left feeling fearful and alone.
I went in thinking maybe there would be some glitch during my hospitalization, but it wasn’t just one thing. I didn’t get my Parkinson’s medications when I woke up from surgery, they didn’t have my medications available that night and they gave me a medication that I should have never been given, which led to a major reaction.
After being discharged, at home I took the pain medication prescribed at the hospital and became delirious. I was hallucinating and had a 103-degree fever. My husband and I didn’t know what was wrong. I found out later that I had a medication interaction caused by Serotonin Syndrome, which is rare but can be fatal. This was a worst-case scenario for me and set my recovery back.
I was shocked that this happened even after everything I did to prepare for my surgery. I am a PD advocate, and I am very involved in the Parkinson’s community. I heard bad hospitalization stories before, but you just don't realize how bad things can be until they happen to you.
I’m happy to share that since this happened, I spoke to the patient liaison about my experience, and have since joined their patient advocacy council. Through participating I will be able to help the hospital address the problems I experienced and help ensure that others will not go through what I went through.
Cindy shares her story in this video:
Julie’s Story
An unexpected reaction to THC sent Julie to the emergency department in an unknown city. When she arrived, the team didn’t believe she had Parkinson’s.
Julie was on a cross-country road trip with her daughter when she began experiencing severe dyskinesia and cramping. This was a fairly common experience for her, and sometimes, she used THC (a form of medical marijuana) to find relief. However, when she did this time, she became unresponsive, and her daughter had to pull over to call 9-1-1.
When they arrived at the hospital, the emergency room (ER) team didn’t believe her when she said that she had Parkinson’s disease. They refused to perform any tests or allow her to take her Parkinson’s medications. Unfortunately, it took several hours to convince the medical team that Parkinson’s medications were essential.
Once they realized that her Parkinson’s medications were not street drugs, she was finally allowed to take them get her symptoms under control.
Ron and Amy prepared for an emergency room visit. But when Covid-19 sent Ron to the hospital it still took too long for him to receive his Parkinson’s medications.
Ron and Amy experienced an unthinkable hospital stay in 2023 after Ron, diagnosed with Parkinson’s in 2019, developed a severe case of Covid-19.
Prior to the emergency visit, they prepared for the unexpected with resources from the Parkinson’s Foundation Hospital Safety Guide. They asked for these materials to be scanned into his electronic chart, knowing that it was essential that the medical team understood Ron’s diagnosis and the importance of administering his Parkinson’s medications in a timely manner.
Despite being assured that Ron’s chart had been updated, they later learned that this had not been the case — the medical team was unaware of his Parkinson’s diagnosis.
Despite Amy’s pleading, Ron did not receive any of his Parkinson’s medications on time. After going into respiratory failure, a life-or-death situation, a new doctor took over, and made time to listen to Amy. He agreed to administer Parkinson’s medications and took great care of Ron for several days throughout the recovery period. In the end, Ron recovered and the new doctor declared that by advocating for Ron’s Parkinson’s needs, Amy had made him an even better doctor.
These tools and more can all be found in the Parkinson’s Foundation Hospital Safety Guide, designed to help you prepare for and navigate a hospital stay.
The Parkinson's Foundation is an official charity partner for the 2025 El Tour de Tucson. By signing up to ride as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org.
Fundraising Commitments:
• Century (102m) - $1,500
• Metric Century (63m) - $1,000
• Half Century (32m) - $750
• Honorary Champion - $500
El Tour de Tucson is one of the premier bicycling events in the country. If you participate in this year’s event, you won’t be alone given that annually over 9,500 cyclists participate in the renowned and popular event. Charity, community, health and wellness are what Perimeter Bicycling and El Tour are all about. They all go hand-in-hand when it comes to building awareness for a bike ride that has been part of the Tucson community for nearly four decades. The routes start and end in downtown Tucson, and engage parts of the majestic Sonoran desert including Davis Monthan Air Force Base, the mountainous and saguaro lined vistas of Old Spanish Trail & historic Colossal Cave. Some routes will also pass through the communities of Corona de Tucson, Vail, Sahuarita and Green Valley.
Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.
The Parkinson's Foundation is an official charity partner for the 2025 Tour de Scottsdale. By signing up to ride as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org.
Fundraising Commitments: For our 2025 race there is no official minimum, however we hope that you will aim to raise at least $500 or more, the sky is the limit on how much impact you can have!
The HonorHealth Tour de Scottsdale offers challenging and scenic courses that will undoubtedly push the limits of cyclists. The Tour de Scottsdale has grown from just a few hundred participants in its early years to attracting thousands of riders from all over the world today! This incredible growth reflects not only the beauty of the route but the strength of the cycling community that comes together each year. The Metric Century Ride circumnavigates the McDowell Mountains riding through Scottsdale, Rio Verde and Fountain Hills. The Half Century is a scenic routes through Scottsdale, AZ that circles Pinnacle Peak.
Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.
The Parkinson's Foundation hopes to be an official charity partner for the 2026 Grandma's Marathon. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org.
Please note that the current listed date is an estimate only and has not been officially announced. Fundraising minimums are subject to change.
Since our inaugural race in 1977, Grandma’s Marathon has grown into something much bigger than just a 26.2-mile race along the scenic north shore of Minnesota. It’s now become a “can’t-miss” weekend in June, a moment when participants of all calibers come together to celebrate the vigor of the human spirit. It’s a day the word “impossible” ceases to exist, a day that you and thousands of others will start as strangers but finish as friends. So get ready to once again tie up your laces for another year of memories, miles, and human might.
Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.
The Parkinson's Foundation is an official charity partner for the 2025 Denver Colfax Marathon Weekend. By signing up to run as a Parkinson's Champion you commit to raising funds and awareness for the Parkinson's Foundation, and in return you get access to a free entry (bib) to the race in addition to tons of other fun benefits and perks. You can learn more about our program and join our interest list at Run4PD.org.
Fundraising Commitments: For our 2025 race there is no official minimum, however we hope that you will aim to raise at least $500 or more, the sky is the limit on how much impact you can have!
The Denver Colfax Marathon is the premier marathon weekend in the Mountain West Region, committed to community, philanthropy, and fun. Originally created by the cities of Denver, Lakewood, and Aurora to recognize Colfax Avenue, the longest main street in America; it’s Denver’s only marathon. The race has grown to be a nationally recognized event featuring unique courses incorporating the iconic landmarks of the Mile-High City. In addition to Marathon Weekend, there are other events in the year such as the annual Colorado Running Hall of Fame evening with new inductees and high school athlete recognition.
Are you looking for a fun way to volunteer for the Parkinson's Foundation & raise your voice while raising awareness? Come out and cheer on our incredible athletes! Learn more and apply at Parkinson.org/ChampionsCheer.
Mental Wellness & Connection for Veterans with Parkinson's
Breaking the Silence: Mental Wellness & Connection for Veterans with Parkinson's
February 27, 2025
This program will bring awareness to the symptoms that are often unspoken among veterans with Parkinson’s. We will address the real impact of loneliness and isolation, offer strategies for managing post-traumatic stress disorder, and provide guidance on overcoming fears associated with symptoms. Explore resources and support options designed to relieve isolation and nurture meaningful connections.
Driving can symbolize freedom and independence, making decisions around driving a particularly sensitive subject for people living with Parkinson's disease. This webinar will address the complex considerations of driving with Parkinson's, including safety, self-assessment, and available resources. Participants will gain insights into how Parkinson's can impact driving skills, explore options for assessing driving abilities, and learn about practical approaches to planning for the future. Through expert guidance and real-life perspectives, this session aims to empower individuals and families to approach this topic with confidence, compassion, and informed decision-making.
Speaker
Margaret O'Connor, PhD, ABPP
Harvard Medical School
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
