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

Read John's full story

Rising Star Award: Dale Picciano

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

Read Dale's full story

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                                        

Read Jen and Rocky’s full story

“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

Read Jordan's full story

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 

Read Cindy's full story

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.

Explore the many ways you can volunteer with us today. 

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.

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.

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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. 
• Learn more about our PD Trial Navigator program and the Neulark study, email PDNavigator@Parkinson.org. 
• Explore ways to get involved in the Parkinson’s Foundation, like becoming a Research Advocate or by sharing your Parkinson’s story.

Deep brain stimulation (DBS) is the most common surgical treatment for Parkinson’s disease (PD). It uses continuous electrical pulses to help control movement symptoms like tremor, stiffness and slowness. For many, DBS can be life changing. Its big shortfall is that it delivers the same stimulation all the time, which does not help with walking difficulties — including unsteady gait, freezing of gait (a sudden inability to move when walking) and falls. These are among the most disabling and dangerous PD symptoms with limited treatment options.

Recently, major advancements have been made in adaptive DBS (aDBS), which is when a DBS device adjusts its stimulation in real time based on a person’s symptoms or behavior. Studies show that aDBS is more helpful for controlling typical “on/off” symptoms (such as tremor and rigidity) compared to traditional DBS treatment. Now, two new studies published in Nature Medicine suggest that aDBS may also hold promise for treating gait impairment in people with Parkinson’s. 

1. One study, conducted by a team at Lausanne University Hospital in Switzerland, developed a system that uses brain signals to detect which locomotor (the ability to move) activity a person is performing — such as sitting, standing, walking or turning — and selects stimulation settings optimized for that specific activity.
2. The other study, led by a team at the University of California, San Francisco (UCSF), took a different approach: timing stimulation to specific phases of the walking cycle, footstep by footstep, guided by brain signals unique to each individual participant.

Both studies were small and early-stage but highlight that adaptive DBS could improve walking in ways that traditional DBS cannot. 

Study Results

The primary focus of both studies was whether adaptive DBS settings that target gait are feasible and safe, and whether they could improve walking compared to traditional continuous stimulation. Encouragingly, neither study reported negative events. 

Adaptive DBS was well tolerated in all participants, and both studies found that it still helped manage the movement symptoms — like tremors and stiffness — that traditional DBS provides. Beyond safety, both teams also tracked changes in participants’ walking patterns, including step consistency, symmetry and falls.

The Swiss study enrolled six people with Parkinson’s who had DBS implants in the subthalamic nucleus. The team used recordings from the implanted DBS device, combined with detailed motion tracking, to develop algorithms that could detect which activity a person was performing — walking on flat ground, avoiding obstacles, turning, etc. — and automatically adjust stimulation settings to match.

• This approach improved movement across multiple daily activities while preserving the benefits of traditional DBS for other movement symptoms.
• This system successfully decoded and adjusted to locomotor activities in real time, even as participants’ symptoms changed or took levodopa medication throughout the day — a key challenge for adaptive approaches.

The UCSF study enrolled five people with Parkinson’s who received DBS implants in the globus pallidus region, along with additional recording devices in other brain regions. Using those recordings, they found that the brain produces distinct electrical patterns during specific phases of walking — for example, when the leg swings forward. 

These patterns were unique to each participant, appearing at different frequencies and brain locations. By identifying each person’s individual ‘gait signature,’ the researchers were able to program the neurostimulator to deliver brief boosts of stimulation timed to match each step.

• During in-clinic testing, this adaptive DBS strategy improved step variability and step symmetry compared to traditional DBS stimulation.
• Three participants completed a multi-day trial in their own homes, where neither the participants nor the researchers knew which type of stimulation was being used. In this real-world setting, adaptive DBS maintained general movement symptom control and reduced falls.

While these are early results need to be confirmed in larger studies, they offer a promising glimpse into a fundamentally new way to address one of the most challenging aspects of Parkinson’s: walking difficulties.

Highlights

• Two studies, both published in Nature Medicine, tested adaptive DBS systems designed to target movement symptoms that automatically adjust to what a person is doing in real time.
• Both studies used personalized brain signals, unique to each participant, that specifically indicated different types of movement or activity. 
• The Swiss study used activity states— for example, recognizing whether a person was sitting, walking, or turning — to switch between optimized stimulation settings.
• The UCSF study used step-level precision — synchronizing stimulation pulses to the exact rhythm of each individual step – to make adjustments.
• Both approaches improved walking measures while maintaining the benefits of traditional DBS for other movement symptoms like tremor and stiffness.
• Neither study reported negative events and showed that these aDBS techniques were well tolerated.
• Both studies were small (six and five participants). Larger trials are needed to confirm these findings.

What Does This Mean?

Falls are a leading cause of injury and hospitalization for people with Parkinson’s. Since walking is a highly complex activity that requires precise coordination, traditional DBS with consistent stimulation often does not address balance and walking issues. Instead of delivering the same stimulation all the time, adaptive DBS devices adjust in real-time based on the brain’s activity. These studies leveraged this concept to specifically target gait impairment, indicating an important shift in how DBS could help walking symptoms. 

If larger studies confirm these findings, adaptive DBS could offer a meaningful improvement in daily life for people living with Parkinson’s — especially those experiencing gait and balance challenges.

These studies worked by identifying unique, personalized brain signals that were specific to each participant. The algorithms for adaptive DBS were then optimized based on this brain activity — a form of individualized, precision medicine. In addition, the physical location of the participants’ DBS implant varied between studies; the success of both platforms indicates that these treatments can be effective regardless of the DBS implant location, offering hope for more people with Parkinson’s.  

What Does This Mean for People with Parkinson’s?

These studies are in the early stages and have only been tested on a very small number of people. Neither paradigm is ready for widespread clinical use. However, hope lies in the fact that these studies have already moved beyond the lab and are being tested in people living with Parkinson’s. Additionally, the Swiss study used a commercially available DBS neurostimulation device, removing an important barrier to access and suggesting that widespread implementation in the near future may be feasible. 

Next, larger trials will need to confirm the findings to improve features for long-term use and to better understand who would benefit most. People experiencing walking difficulties and falls related to Parkinson’s should talk to their doctor about current treatments and keep an eye out for future adaptive DBS clinical trials. 

Learn More

The Parkinson’s Foundation Helpline (1-800-4PD-INFO) provides answers to questions about PD symptoms and management. Learn more about this topic with the below resources: 

• Deep Brain Stimulation (DBS)
• Considering Deep Brain Stimulation
• Advanced Treatment Options: A Guide to Deep Brain Stimulation, Pump Medications & Focused Ultrasound

On June 29, the National Parkinson’s Project Advisory Council held its first meeting, a milestone that was years in the making and a turning point for the Parkinson’s community. 

The Council brings together Parkinson’s experts, government officials, care partners, advocates and people living with Parkinson's disease (PD) to develop the first-ever national plan to better diagnose, treat, prevent and ultimately cure Parkinson's. Michael S. Okun, MD, National Medical Advisor to the Parkinson's Foundation, was appointed to the Council, helping ensure the National Plan to End Parkinson's reflects both scientific expertise and lived experience.

This moment did not happen on its own. It is the result of years of advocacy by people like you. Advocates shared their experiences with Congress to push for the creation of this initiative in 2024. And less than a month after hundreds of advocates went to Capitol Hill this spring urging action on the National Parkinson's Project, the Council was finally seated.

Now the real work begins — and so does our responsibility to keep up the momentum. The Parkinson's Foundation is urging the Council to:

• Issue its first annual report within one year.
• Prioritize an estimate of the federal funding needed to address Parkinson's. 
• Make actionable recommendations to improve care for people living with PD across the lifespan.

What came out of this first meeting? Here are three takeaways:

1. The Council Acknowledged the Urgency to Act

From the outset, leadership from the National Institute of Neurological Disorders and Stroke set a tone of urgency, recognizing that the initiative's initial deadlines had been missed and emphasizing the need for actionable recommendations without further delay. 

Encouragingly, the Council indicated that a report would be delivered in summer 2027, which aligns with our ask that the Council produce its first report within one year. For a disease where there is no time to waste, that commitment to a timeline matters.

2. The Council Acknowledged More PD Resources Are Needed for Care and Research

To meaningfully address Parkinson's, we first need to understand the full costs of the disease — across research and care. The Parkinson's Foundation has been pushing for the Council to develop an estimate of the federal funding needed to prevent, diagnose, treat and ultimately cure Parkinson's, as well as the investment required to improve quality of life for those living with PD today. 

In this first meeting, the Council acknowledged the importance of creating an estimate as they continue their work. This is an important step: a clear picture of what it will take gives Congress the roadmap it needs to determine funding levels and spur meaningful investment.

3. The Parkinson’s Community Showed Up in Force

The energy and public engagement were unmistakable; more than 160 comments were submitted for this first meeting. Ken Chason,  People with Parkinson's Advisory Council Vice Chair and person living with PD, was one of 10 people recognized to present. 

“The Parkinson’s crisis is real and urgent,” Ken wrote in his testimony. “More than 1.1 million Americans have the disease, with approximately 90,000 new diagnoses each year. Parkinson’s is relentlessly progressive, devastating patients and families alike, and is on track to further strain our healthcare system. To fully understand the challenge and chart a way forward, it is essential to hear from people who live with Parkinson’s every day. As the Council begins its work, I urge it to keep the experiences of those living with Parkinson’s in mind.”

Ken drew on his own diagnosis journey to spotlight the community's top priorities: produce the overdue report within one year; identify the resources needed to prevent, diagnose, treat and ultimately cure Parkinson's; and prioritize recommendations to improve access to high-quality care. It was a powerful reminder of what the community can accomplish when it speaks with one voice.

Your Voice Can Shape What Comes Next

The first meeting is only the beginning. The decisions this Council makes over the coming months and years will shape Parkinson's research, care and quality of life for generations. 

The Parkinson's community making its voice heard is critical in making sure the Council  delivers results. You helped create the National Parkinson's Project. Now you can help see it through.

Ready to make a difference? Visit our Advocacy Center to join our Advocacy Network, contact your representatives and take action on the issues that matter most to the PD community today.