Check-in & Resource Fair* begins at 11:00 a.m. and the program starts at 11:30 a.m.
This program provides an overview of current Parkinson’s research, including PD GENEration, and its impact on treatment and care. Participants will learn the difference between studies targeting symptoms and those aiming to slow disease progression. We will also explore recent advancements and how ongoing research may shape future therapies and personal care.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Speakers
Nicola Bothwick Clinical Research Parkinson's Foundation
Megan Finke Clinical Research Parkinson's Foundation
David K. Simon, MD, PhD Beth Israel Deaconess Medical Center
Anne Marie Wills, MD Mass General Bringham
George Skaliotis PD GENEration Participant
Wendy Buchanan PD GENEration Participant
Movement Demonstration by Todd Paris Rock Steady Boxing-Greater Boston JCC
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.
The Parkinson's Foundation Midwest Chapter and Northwestern Medicine Parkinson's Disease and Movement Disorders Center present: Parkinson's Disease Patient and Family Symposium.
This program provides an overview of the current understanding of Parkinson's disease risk factors, exploring how genetics, lifestyle, and environmental influences may contribute to disease development. Attendees will learn about genetic risk factors and the latest genetic clinical trials, examine environmental and lifestyle factors associated with Parkinson's disease, and receive updates on emerging research and ongoing clinical trials shaping the future of prevention and treatment.
Speakers
Tanya Simuni, MD, FAAN Northwestern Medicine Parkinson's Disease & Movement Disorders Center A Parkinson's Foundation Center of Excellence
Danny Bega,MD, MSCI Northwestern Medicine Parkinson's Disease & Movement Disorders Center A Parkinson's Foundation Center of Excellence
Lucy Morse,MD Northwestern Medicine Parkinson's Disease & Movement Disorders Center A Parkinson's Foundation Center of Excellence
Ignacio Keller-Sarmiento,MD Northwestern Medicine Parkinson's Disease & Movement Disorders Center A Parkinson's Foundation Center of Excellence
Paulina Gonazalez-Latapi,MD, MsC Northwestern Medicine Parkinson's Disease & Movement Disorders Center A Parkinson's Foundation Center of Excellence
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.
10 a.m. Welcome / Opening Remarks Danny Bega, MD, MSCI, Northwestern Medicine Jessica Bartsch, MS, NCC, Parkinson's Foundation
10:15 a.m. Key Note: Risk Factors for Parkinson’s Disease: An Overview of Genetics, Lifestyle, and Environmental Factors Lucy Morse, MD, Northwestern Medicine Ignacio Keller-Sarmiento, MD, Northwestern Medicine Paulina Gonazalez-Latapi, MD, MsC, Northwestern Medicine (Q&A to follow presentation)
12:05-12:10 p.m. Break
12:10 p.m. Updates in Research & Clinical Trials Tanya Simuni, MD, FAAN, Northwestern Medicine (Q&A to follow presentation)
The Parkinson's Foundation Midwest Chapter in partnership with Northwestern Medicine Parkinson's Disease and Movement Disorders Center presents: The Parkinson's Disease Patient and Family Symposium.
Check-in & Resource Fair* begins at 10:00 a.m. and the program starts at 10:30 a.m.
Exercise is a powerful tool for managing Parkinson’s disease symptoms at every stage. This program explains how staying active supports movement, mood and thinking and may even slow disease progression. Participants will learn practical ways to build exercise into daily life for better mobility and overall well-being.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Lunch will be served. Parking is available on site.
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.
Check-in & Resource Fair* begins at 10:00 a.m. and the program starts at 10:30 a.m.
Even after years of good symptom control, Parkinson's disease can take unexpected turns. This program explores the "mid-stride" changes that happen and offers strategies to manage them. Learn about treatment options, when to adjust your care team, and how to stay independent and supported as your needs change.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Speakers
Guy Schwartz, MD Movement Disorders Neurologist Co-Director, Stony Brook Parkinson's and Movement Disorders Center Stony Brook Medicine
Carine Maurer, MD, PhD, FAAN Movement Disorders Neurologist Stony Brook Parkinson’s and Movement Disorders Center Stony Brook Medicine
Lunch will be served. Parking available on site.
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.
Join the Parkinson’s Foundation on Thursday, September 3, 2026 for the inaugural Move & Mingle Las Vegas Speakeasy for a Cure event at the Underground at the Mob Museum! Prepare for an evening of cocktails, period-inspired appetizers, conversation and connection as we continue the fight against Parkinson's disease. Hosted by two-time Emmy Award-winning journalist and meteorologist Chloe Koast of News 3 Las Vegas.
Honoree and inaugural Voice of Hope Award recipient: Nina Ten of Spotlight President & COO, Spotlight Senior Services Las Vegas
Special Guest: Erin O'Quinn, Associate Vice President of Public Policy, Parkinson's Foundation
Check-in & Resource Fair* begins at 10:00 a.m. and the program starts at 10:30 a.m.
Exercise is a powerful tool for managing Parkinson’s disease symptoms at every stage. This program explains how staying active supports movement, mood and thinking and may even slow disease progression. Participants will learn practical ways to build exercise into daily life for better mobility and overall well-being.
*The Resource Fair will feature local Community Partners that provide services and support for the Parkinson’s Community.
Speakers
Vivian O. Smith Fitness Coordinator/ RSB Certified, CDP, CADDCT
Celebrating Our 2026 National Volunteer Award Recipients
🧠 What will you learn in this article?
This article celebrates 2026 Parkinson’s Foundation National Volunteer Award recipients, recognizing the dedicated volunteers whose leadership, service, fundraising and community-building efforts help advance our mission. It highlights:
How each honoree supports and impacts the PD community.
Their PD story.
How volunteers help us strengthen connections and move research forward.
Volunteers are at the heart of the Parkinson's Foundation mission. Across the country, they raise awareness, build community, support programs, advocate for change and help connect people living with Parkinson's disease (PD) and their families to the resources they need.
Each year, the Parkinson's Foundation recognizes exceptional volunteers through our national volunteer awards. These awards celebrate key people whose service, leadership and dedication have made a lasting impact on the Parkinson's community.
We are proud to introduce our 2026 National Volunteer Award recipients. Meet John, Dale, Jordan, Jen, Rocky and Cindy below — and let their stories inspire you as they have us.
Paul Oreffice Volunteer of the Year: John Poma
John embodies the spirit of service. His leadership spans community, state and national levels — from chairing Moving Day Richmond and the Volunteer Leadership Summit to representing Virginia at the Parkinson’s Policy Forum. Through the People with Parkinson's Advisory Council, he has advised on PD GENEration: Powered by the Parkinson’s Foundation, reviewed community grants and encouraged young investigators at the research grantee summit, demonstrating his commitment to advancing science and care.
Beyond his formal roles, John consistently uses his voice to raise awareness of REM sleep behavior disorder and the lived experience of Parkinson's through local and national media. He partners with healthcare providers at Virginia Commonwealth University, a Parkinson’s Foundation Center of Excellence and beyond — including researchers at Mass General and Harvard — to advance the Foundation's mission. John believes in empowering others through education and has spoken at major events, including the Planning for Prevention of Parkinson's conference.
“One of the guiding principles of my longtime professional career in and around healthcare is that helping one person may not change the world, but it may change the world for that one person.”- John Poma
Dale’s impact has been extraordinary in a short amount of time. His authenticity, leadership and willingness to openly share his diagnosis have helped break down barriers and create meaningful awareness around PD within the first responder and firefighter communities. By leveraging his lifelong connections, he not only raised significant funds for the Parkinson’s Foundation but also expanded our reach into a passionate and service-oriented network of supporters.
What makes Dale especially deserving of the Rising Star Volunteer Award is the way he channels his own experience into action for others. Rather than stepping back after his diagnosis, he stepped forward — becoming a fighter, advocate, fundraiser and source of inspiration. His dedication perfectly reflects the spirit of courage, community and perseverance that this award represents.
“I am honored and privileged to walk amongst many heroes that are fighters, that won't quit and are fighting back.” – Dale Picciano
Top Fundraiser Award: Jordan Levin, Jen & Rocky Pontikes
Jen and Rocky Pontikes, along with Jordan Levin, transformed one idea into an inspiring movement that united hundreds of people during Parkinson's Awareness Month. Through the Million Meter Challenge, participants rowed, walked, biked and ran together to demonstrate the power of movement while raising critical funds to advance Parkinson's research and improve care.
What began with Jen's passion for rowing as a way to manage her Parkinson's symptoms grew into a multi-state community effort that inspired more than 300 participants to move more than 24 million meters and raise more than $185,000 for the Parkinson's Foundation. Their creativity, leadership and ability to bring people together exemplify the spirit of this award.
“The Parkinson's Foundation introduced me to an extraordinary community of people living with Parkinson's, care partners, advocates, researchers and healthcare professionals. Through those connections, I found my voice. What began as one of the most difficult moments of my life became my purpose.” - Jen Pontikes
“My hope is simple: to support the research and education that may one day cure or ease these brutal diseases, and to ensure that caregivers are never left without the information, resources and support they need on their own journey.”- Jordan Levin
The Nathan Slewett Legacy Community Service Award: Cindy Finestone
Cindy leads by example through extraordinary service to the Parkinson's community. As President of the Parkinson’s Foundation New York Chapter Board, facilitator of the Women with Parkinson's Community Network, Research Advocate and dedicated Moving Day volunteer, she consistently gives her time, leadership and compassion to support others living with Parkinson's.
When Cindy logged her volunteer hours for the year, she wasn't seeking recognition — she simply wanted to ensure the impact of her chapter was reflected. Only then did she realize she had contributed an incredible 339 volunteer hours, a testament to the countless ways she strengthens her local Parkinson's community.
“Being involved in the Parkinson’s Foundation makes me feel like I’m doing something that’s helping. Everything I do is somehow related to the Foundation. I attend a PD support group of 60 women, some of whom have become my closest friends — and I found this group through the Foundation. I call the Helpline for referrals. I go on Parkinson.org every time I feel a new symptom coming."- Cindy Finestone
Congratulations to our 2026 award recipients! As we celebrate these six outstanding people, we are grateful for every volunteer who gives their time, talents and passion to help us make life better for people living with Parkinson's.
Check-in starts at 11:30 am and the program starts at 12:30 pm. A complimentary boxed lunch will be provided.
Please join the Parkinson's Foundation Midwest Chapter in partnership with the Froedtert & the Medical College of Wisconsin Movement Disorders Team, a Parkinson’s Foundation Center of Excellence, for our Parkinson's Disease Symposium: Building Your Parkinson’s Toolbox.
This educational program will offer practical information and strategies to support everyday health and well-being, for those affected by Parkinson’s. Attendees will hear from experts on topics including sleep and fatigue, preparing for medical appointments, fall prevention/home safety, nutrition, and self-care for care partners. Throughout the day, participants can also connect with local vendors and community resources that provide valuable information. Whether you are navigating Parkinson's yourself or caring for a loved one, this program offers tools, education, and encouragement.
Speakers
Sheila Rane Eichenseer, MD, MS Froedtert & MCW health network
Molly Sievers, DPT, NCS Froedtert & MCW health network
This program is a partnership with the Parkinson's Foundation Midwest Chapter and the Froedtert & the Medical College of Wisconsin Movement Disorders Team- a Parkinson's Foundation Center of Excellence.
Check-in & Resource Fair begin at 12 pm and program begins at 1pm.
Managing Parkinson’s disease (PD) symptoms goes beyond traditional medications, with integrative health and holistic approaches offering additional support. This program introduces participants to options—such as massage, acupuncture, red light therapy, and CBD—that can help relieve symptoms and enhance daily well-being. By exploring integrative health's focus on root causes and whole-body wellness, participants will gain a deeper understanding of how these therapies can address symptoms and improve overall quality of life, providing a more balanced and individualized approach to PD management.
Speaker: Kayla Daniel, MA OSU Wexner & the Movement Disorders Clinic at OSU Wexner
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.
12:00 pm- Check in & Resource Fair 1:00 pm- Program Starts 1:40 pm- Movement Break 2:00 pm- Program Part 2 3:00 pm- Program ends
This article describes 5 facts about LRRK2, a gene related to Parkinson’s disease:
LRRK2 variants are changes in a Parkinson’s-related gene called LRRK2. These variants can change how brain cells function.
These changes can increase a person’s chance of getting Parkinson’s later in life.
Certain ethnic and ancestral groups have a higher chance of having a LRRK2 variant.
Researchers are closely studying LRRK2 to find new treatments for PD.
Genes are the instructions for making the proteins that give us individual characteristics. Just as genes influence traits like eye color or height, sometimes there are changes to a person’s genes — called genetic variants or mutations — that increase the risk of developing certain diseases.
In some people, Parkinson’s disease (PD) can be linked to genetic factors. The PD GENEration: Powered by the Parkinson’s Foundation genetics study found that about 1 in 8 participants has a genetic variant related to Parkinson’s.
This blog outlines five facts about one of the genes examined in PD GENEration, LRRK2, and why studying it is important for the entire Parkinson’s community.
The Genetics of LRRK2
LRRK2 (pronounced “Lark Two”) stands for Leucine-rich repeat kinase 2 and was discovered in 2002. Since then, studies have shown that variations in this gene are related to developing Parkinson’s disease.
Everyone inherits two copies of the LRRK2 gene — one from each parent. Changes in LRRK2 follow a dominant inheritance pattern, meaning a variant in just one copy of the gene can increase a person’s risk for Parkinson’s disease.
However, these variants also have “reduced penetrance,” which means that the gene doesn’t act alone to cause Parkinson’s. Whether someone with a LRRK2 variant eventually develops Parkinson’s depends on a combination of genetics and other factors like age and environment. Some people carry a LRRK2 variant but never show symptoms of PD.
1. LRRK2 variants are a common genetic contributor to developing late-onset Parkinson’s.
PD GENEration, the international research study providing genetic testing and counseling at no cost for people with PD, looks for changes in several Parkinson’s-related genes including LRRK2. To date, PD GENEration has found that:
12% of participants have a variant in one or more of the genes tested.
About 2% of participants have a LRRK2 variant.
LRRK2 is the most common genetic contributor to late-onset Parkinson’s disease (when Parkinson’s symptoms appear after the age of 50).
Most PD (with or without a variant) is considered late-onset, starting later in life and involving changes like slowed movement and shaking.
The way Parkinson’s appears in people with a LRRK2 variant does not look physically different than Parkinson’s in people without this change. Because of the similarities, researchers are investigating whether understanding LRRK2 could open doors to new treatments for all people with Parkinson’s.
2. Certain ethnic groups are more likely to have LRRK2 variants.
Different ancestral and ethnic groups can have different risks for genetic diseases. Findings from PD GENEration show that 10.5% of people who identify as Ashkenazi Jewish, 4.0% of people who identify as Berber, and 3.8% of people who identify as Basque carried a LRRK2 variant — compared to 1.2% of people who identified as having none of these ancestries.
People with a higher chance of having a LRRK2 variant can use genetic testing like PD GENEration to better understand their genetic makeup for themselves and their families.
“For me, it was reassuring to learn that I am a LRRK2 carrier, because then I knew that we had a target. There are clinical studies I can participate in to help advance the field. Within a week of learning that I have a genetic variant, I was participating in research, and I’ve been participating in research ever since.”
-Jessi Keavney, Parkinson’s Foundation Research Advocate
3. A variant in the LRRK2 gene may make it harder for cells to clear out unwanted material.
The LRRK2 gene gives cells instructions to make the LRRK2 protein, which is responsible for powering the cell and directing nutrients and waste. A variant in LRRK2 can make the protein too active, disrupting the way a cell’s materials are normally transported.
Research suggests that while LRRK2 normally helps cells clean up and recycle waste, LRRK2 variants may stop this system from working properly. Waste can collect in cells — including in brain cells called neurons. When this happens, the buildup can lead to inflammation and cell death. Early Parkinson’s symptoms appear after the loss of neurons that make dopamine, a chemical that helps the body coordinate movement.
4. LRRK2 is a target for new PD treatments.
Scientists are highly focused on how mutations in the LRRK2 gene influence Parkinson’s disease. By developing treatments to calm or quiet an overactive LRRK2 gene, researchers hope to protect brain cells and potentially slow or halt the progression of Parkinson’s.
There are several active clinical trials — studies that test new treatments — for therapies targeting LRRK2 in Parkinson’s. Some studies require a confirmed LRRK2 variant, which can be verified with clinical-grade genetic testing like PD GENEration.
For those who have already participated in PD GENEration, our PD Trial Navigator program currently partners with Neuron23 for the Neulark trial for LRRK2. For more information about Neulark or other partner trials as they become available, email PDNavigator@parkinson.org.
5. LRRK2 breakthroughs could benefit the entire PD community.
Even highly targeted genetic research has the potential to help broader communities. For example, research into a rare genetic condition called familial hypercholesterolemia (FH) helped scientists discover how the body regulates cholesterol. This led to the creation of statins, a medication that lowers cholesterol and is widely used today by people with and without FH.
Enroll in Our Genetics Study
Understanding the connection between Parkinson's and genetics can help us figure out how the disease develops and ultimately the best way it can be treated or cured.
Scientists are hoping LRRK2 research may hold broader promise because of the similarities between LRRK2-related Parkinson’s and the more common idiopathic Parkinson’s — PD without a known cause. What they discover could help many people with Parkinson's in the future.
Learn More
The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. Learn more with these resources:
Learn about and enroll in PD GENEration to find out if you have a LRRK2 or another Parkinson’s-related gene variant.