My PD Story

A man in a yellow cap and blue shirt sits in a red vintage car with a happy brown-and-white dog beside him.
People with PD

Joe Staub

For a long time, I knew something was wrong. Deep down inside I knew.  My handwriting was getting bad, I had a tremor in my hand, my arms no longer swung when I walked, and I had trouble standing and walking because of my balance. I didn’t want it to be true. I prayed that it was not.  

The first 10 years of my marriage was spent helping my Dad. He had Parkinson’s disease (PD). I did all the normal things a son would do. I did yard work, took him for haircuts and ran errands. I helped when I could. I was raising a young family myself and only had so much time.

Joe Staub holding hands with his wife at a formal event.

We talked about support groups and clinical trials. He was set in his ways, hard and not willing to give. He told me that for him, going to a support group was like looking into his future. He didn’t need it.

Suddenly, my wife’s mother was diagnosed with Parkinson’s. I saw all the early signs and steady decline. I witnessed firsthand the impact and demands of being a primary caregiver that were placed on my wife.

I finally got up the courage to stop ignoring my symptoms. I had had enough of lying to myself and hiding it from others. It was time to get this out in the open.  I have Parkinson’s disease. There, I said it. As it turned out, it was not a surprise to those who know me best.

The diagnosis was devastating, expected, but none the less devastating. I accepted it, after all I had been preparing myself for some time. What I didn’t expect, was the guilt I felt for my wife. I didn’t care about myself, but rather why was this happening to her? She cared for me and our family as we helped my dad. She cared for her mother for all those years, and now she was literally going to be caring for me.  The guilt was overwhelming! 

I was surprised; the basic treatment of Parkinson’s had not changed much since my dad’s diagnosis in the late 1980’s. A lot is now known and there are many new treatments to eliminate or reduce the symptoms. But for all intense purposes, you treat the symptoms. Slowing or halting the progression of this disease is still in the future. Everyone I talked with said, the single most important finding was to keep moving. If anything seems to slow the progression, it’s exercise.

My father and my mother-in-law both laid down and accepted it. I was not going to go without a fight. I was going to make the best of this situation. I am a firm believer that each life event is preparation for something else that will happen in your future. I am young, and in relatively good health, no heart problems, no cancer, good vitals and active. Surely, I’ve been placed into this position for a purpose?

As is her passion, my wife (she’s a librarian) immediately jumped into research mode. We set out to find the right doctor for us, and she started exploring emerging treatments and therapies. That lead us to clinical trials. 

I knew nothing about clinical trials. How to find one, what was involved, what was expected, how long they lasted, the screening process, the commitment, the potential risks, the potential benefits and least of all what it would mean for me.

There are many places to look for clinical trials: 

Once we contacted Quest, there was a screening process and a series of questions asked over the phone to determine if you are a potential candidate for a trial.  

If you meet the criteria, you are invited to continue the qualification process, and an office visit is scheduled. The initial visit is generally a review of the information provided during the screening call and a physical exam.

An Informed Consent document is provided, which provides a detailed description of the specific clinical study. This tells you exactly what to expect and what is expected of you.

Assuming the screening process goes well, and you sign the consent form, a schedule is developed to meet the trial’s protocol. This details what is being done and when it will be. Phone calls, office visits and procedures. This schedule is different for every trial and reflects the study’s requirements and goals.

My PD research experiences have always been positive, I have received:

  • Early access to the newest drugs and therapies.

  • Access to expert medical care by physicians who are focused on advancing the treatment of Parkinson’s and have your best interest in hand and understand the ups and downs of PD.

  • Met others Parkinson’s patients on a similar journey, compared notes, created new friendships, realize that I’m not alone.

  • I have seen others that are in subsequent phases of a drug trial.  Knowing I helped move that drug along earlier in its approval cycle.

As a patient volunteer in several trials, I have participated in simple trials that required a single office visit, drug studies that lasted 1 to 3 months and required several overnight stays and even completed a trial that required a 30-day inpatient stay.

I’ve got to tell you, my own fears and anxieties about doctors and medical procedures cause me more stress than the actual examination and procedure. I have consented to having my vitals taken, EKG’s, blood draws, CAT scans, MRI’s, DAT Scans, IV infusions and Lumbar Punctures. Not to mention the psychological evaluations and cognitive testing, which are more unnerving for me than any medical procedure!

Did you know that one of the biggest reasons bringing a new drug to market takes so long is the lack of patient volunteers to participate in clinical trials?

"Next to marrying my wife and fathering my children, participating in clinical trials is the single most rewarding accomplishment in my life."

I never expected this. I don’t do this to be the recipient of the advancement, but so others won’t have to endure this journey. I don’t kid myself. My Parkinson’s is progressing, and the development and approval of new drugs is a time-consuming process. This is my purpose!

My participation in clinical trials, overcoming my fears and anxieties, contributing to the advancement of a cure and knowing that my contribution to the Parkinson’s community may someday prevent others from having to walk this same path is my single greatest moment. 

My wife and I act as a mentor team (person with PD and caregiver) for the newly diagnosed.  We participate in a mentorship program and regularly learn from and reference Parkinson.org in emails and as resources to our mentees. 

So, I end this by asking you to please consider volunteering for a clinical trial.  We are on the verge of a cure. We need those both with and without Parkinson’s. Without your support, progress toward our common goal, a cure, will be slow in coming.

Learn more about ongoing Parkinson’s research and visit our Join a Study page to explore PD studies that are currently enrolling.

My PD Story

Smiling couple in jackets standing on a boat with a lake and trees in the background.
People with PD

Patricia Nuxoll

I was diagnosed with Parkinson’s disease (PD) in a strange way. I was at a pain clinic getting a steroid shot in my back when it was suggested that I should see a neurosurgeon. I agreed, so an appointment was made. When I met him, he kept looking at my hand. After a few minutes he stopped talking and said he wanted me to see a neurologist for an EMG (a diagnostic test that measures muscle response). Not being sure what that was I said OK, and another appointment was made. 

When the neurologist appointment came, I met her and before the EMG I was asked many questions and went through a series of tests. Not really knowing why, but knowing there must be a reason, I complied. Finally, I had the EMG, and then a cognitive test. 

She took very detailed notes the whole time and excused herself for a few minutes. When she came back, she said we had several things to talk about and proceeded to tell me that I had Parkinson’s.  

My reaction was what it might feel like if you were hit in the face with a football. I never saw it coming.

The neurologist was very kind and explained what led to the diagnosis. It turns out the neurosurgeon noticed my tremors and sent me to her thinking that she needed to look further. It took me two weeks to process this information. 

I was in complete denial but after that, I was able to take a physical therapy (PT) class designed for Parkinson’s called BIG movement. It has changed my life. It has been the best thing I could have ever done. 

My outlook is positive, I am boxing now, I walk confidently, my balance is better. I participated in my first research study, the Parkinson’s Foundation genetics study, PD GENEration, because this hits as close to home as you can get. I want to do whatever I can to help find a cure so that hopefully no one in my family or anyone else’s family ever has to go through this experience.

I wanted to participate in this study for a couple reasons. The first was for my family. I felt it was important to find out if I had a genetic link to PD they wanted to know about. Once I submitted my genetic sample, I asked each person in my family if they wanted the results and told them I would respect their answer with no judgement. The second reason was for myself because having Parkinson’s has opened my eyes to just how much I have never known or understood, and more information could only help me.

It felt great to participate in this study because I felt that I was being proactive. For me, anything that can help get answers is one step closer to hopefully finding a cure for this disease.

I will tell anyone who is newly diagnosed, don't feel bad if you get angry, or are in denial, that's a normal response. In my area there is a wonderful group that I connected with that we meet once a month and share news about research we have found, diet, PT, anything. It’s great because we all understand where we are coming from without having to explain. 

Parkinson's is hard but you don't have to travel that road alone even if you have family at home who help you.

Advancing Research

Gaining Ground: The Pursuit of Improving and Introducing New Parkinson’s Medications

White pill bottles arranged in an organized fashion on a blue background with one bottle spilling pills

Biochemist Kevin McFarthing, PhD, remembers everything about his Parkinson’s disease (PD) diagnosis. “I was diagnosed at 4 p.m. on the 10th of December in 2012,” he said. Ever since, he’s been on the trail of a cure, cataloguing potential Parkinson’s therapies as a joint editor of Clinical Trial Highlights, Journal of Parkinson’s and curating the Parkinson’s Hope List, a database of more than 350 ongoing studies.

In the Parkinson’s Foundation Expert Briefing: The Latest Advances in Parkinson’s Research and Treatment, Dr. McFarthing shares the latest advances in research and how participating in clinical studies brings us closer to a cure.

An Urgency for Progress

Parkinson’s is on the rise. A Parkinson’s Foundation-supported study revealed that 90,000 people in the U.S. are diagnosed with the disease every year. By 2040, more than 12 million people worldwide will live with PD. Pharmaceutical companies are invested in speeding a cure. Identifying new Parkinson’s therapies is among top pharmaceutical research and development priorities.

“We all have our own views of what the cure might mean,” Dr. McFarthing said. For some, it might be “a magic bullet to resolve symptoms and restore our abilities back to where we were before.” While others might hope for “a drug that gives another 10 years of symptom-free life.”

The Challenges

Though drug companies are pursuing advanced therapies for Parkinson’s, costs are high and competition for funding is steep. Countless trial medications often fail in the lead-up to a successful central nervous system drug, such as levodopa (the current first-line Parkinson’s therapy, discovered more than 50 years ago).

According to the Tufts Center for the Study of Drug Development, a central nervous system therapy can cost more than $2 billion in research and take nearly 20% longer than other drugs to develop.

Parkinson’s is complex. Symptoms manifest differently in each person, making a one-size-fits-all approach to drug therapy tricky. Research participation is essential to uncover the causes behind the disease and to find new treatments for the symptoms people see — including tremor, rigidity and slowed movements — and the many non-movement symptoms that accompany PD.

Diverse research and continued investment are also essential. Luckily, as Dr. McFarthing points out, “There is a massive amount of work going on.”

Globally, there are more than 100 studies exploring ways to improve various PD symptoms. More than 250 are investigating potential disease-modifying therapies, treatments that could potentially slow, stop or reverse disease progress.

Bringing New Treatments to Light

After identifying a promising new disease treatment through observational, animal or cell studies, researchers seek clinical trial funding and participants. These carefully monitored trials are done in phases — usually testing one active agent against a placebo — to determine safety and effectiveness. Typically, a prospective therapy must successfully pass Phases 1, 2 and 3 before the Food and Drug Administration (FDA) decides whether a company can submit a new drug application.

Treatment studies to watch include:

Dyskinesia (involuntary, erratic, writhing movements) therapies targeting side effects associated with long-term levodopa use:

  • Celon Pharma S.A.’s oral, once-daily CPL'36 demonstrated positive Phase 2 results. The drug hinders activity phosphodiesterase 10a enzyme activity, increasing brain levels of certain chemical messengers to improve motor control.  

  • After finishing Phase 2B trials IRLAB’s mesdopetam (IRL790) failed to meet primary endpoints. Researchers are continuing to evaluate its treatment potential. The drug blocks dopamine D3 receptor activity, which may be linked to levodopa-induced dyskinesia.

  • Phase 1 investigation of Vistagen’s AV-101 is underway. The drug targets malfunctioning N-methyl-D-aspartate (NMDA) receptors. Healthy receptors are key to nerve cell communication in the brain.

  • Sinopia Biosciences is expected to begin clinical trials for a preclinical dyskinesia drug candidate SB-0110.

Drugs that maximize “on” time — the period levodopa provides peak symptom control. As Parkinson’s progresses, a person can experience more “off” times. Therapies intended to extend “on” time include:

  • Vyalev (Produodopa in Europe), available in the U.S. as of 2024. This new levodopa formulation targets advanced Parkinson’s. A portable pump delivers a steady infusion of medicine under the skin, providing more consistent symptom control. Vyalev may also improve sleep quality, early morning “off” times and other symptoms.

  • Tavapadon stimulates select dopamine receptors to improve movement function and reduce side effects. Current dopamine agonists are nonselective and side effects can include compulsive behaviors and visual hallucinations. Tavapadon delivered good symptom control in Phase 3 trials as a standalone medication and when used in addition to levodopa. The manufacturer, AbbVie, plans to submit a new drug application to the FDA this year.

Stem cell research is challenging. It involves brain surgery and, following the implantation of cells, it takes time to see whether symptoms improve. Despite many stem cell studies for Parkinson’s, researchers had not moved beyond Phase 2 until recently:

  • BlueRock Therapeutics, a division of Bayer, submitted positive Phase 1 data on bemdaneprocel – cell therapy that aims to replace dopamine-producing neurons lost in Parkinson’s. Based on the data, the FDA granted the drug a regenerative medicine advanced therapy designation, allowing it to move into Phase 3 trials in early 2025.

 Investigational therapies holding promise to stop or slow PD progression include:

  • Neurotrophic growth factors, molecules that stimulate nerves to grow. These may benefit people with Parkinson’s. AskBio’s AB-1005, a glial cell line-derived neurotrophic factor (GDNF) delivered directly to the brain, may minimize dopamine loss associated with Parkinson’s.

  • Potential neuroprotective benefits of brain-derived neurotrophic factor and cerebral dopamine neurotrophic factor.

  • NLRP3 Inflammasone protein inhibitors aim to block activation of inflammatory molecules linked to loss of dopamine in Parkinson’s.

  • Potential neuroprotective benefits of nicotinamide riboside, a form of vitamin B3.

Researchers are also exploring ways to prevent buildup of alpha-synuclein protein, the protein that forms toxic clumps, called Lewy bodies, in the brain of people with PD:

  • Roche’s Phase 2 studies of prasinezumab, targeted accumulation and spread of alpha-synuclein. The study did not meet its goal, but the company plans to pursue data that potentially shows benefits of prasinezumab in early Parkinson’s.

  • Annovis Bio Phase 3 recently concluded studies of buntanetap, a drug that reduces alpha-synuclein production. Buntanetap did not meet the study’s goals. However, the company plans to continue investigating the drug.

  • Mutations in the GBA gene (which makes the enzyme glucocerebrosidase, or Gcase) are one of the most common genetic risk factors for PD. Several companies are researching whether compounds that stimulate Gcase activity can improve motor function or offer neuroprotection. 

    • Ambroxyl, a cough medicine used to decrease phlegm, has been shown to increase Gcase activity in people with Parkinson’s. It may clear away toxic alpha-synuclein clumps. A Phase 3 trial is underway.

    • LRRK2 gene mutations are the most common cause of genetic PD. Investigational studies at four companies are exploring how LRRK2 inhibitors might provide neuroprotective benefits. Another five companies are in clinical trials.

Other potential disease-modifying therapies include GLP-1 agonists. Primarily developed to control diabetes, GLP-1 agonists mimic the human glucagon-like peptide-1 (GLP-1) hormone, which controls blood sugar and appetite. Recent GLP-1 agonist studies include:

  • Lixisenatide therapy. Phase 2 trial participants with early PD experienced less motor disability progression than placebo at 12 months. However, many participants experienced gastrointestinal side effects.

  • Liraglutide showed significant improvement in some non-motor symptoms, but no difference in motor symptoms during Phase 2 study.

  • Phase 3 investigation of exenatide showed the drug was safe and well-tolerated but showed no advantage over placebo in Parkinson’s.

  • Phase 2 investigations of NLY01, modified exenatide, did not show improvement in Parkinson’s symptoms.

  • Researchers are awaiting results of a Phase 2 Oslo University Hospital clinical study exploring the potential value of semaglutide in Parkinson’s.

Building on Hope

The only way to speed the development of treatments that can slow or stop Parkinson’s is through amplified, ongoing funding. The Parkinson’s Virtual Biotech, a partnership between the Parkinson’s Foundation and Parkinson’s UK, is funding 11 new medications and therapies in research and development.

The Edmond J. Safra Accelerating Clinical Treatments for Parkinson's Disease (EJS-ACT PD) Initiative aims to fast-track safe drug testing therapies using multi-arm multi-stage (MAMS) trial designs — a newer, more cost-effective approach.

MAMS trials allow researchers to assess multiple treatments at once against a placebo. Researchers can discover what is working and discard what is not, without dismantling a trial and starting again. The goal is to facilitate a seamless, cost-effective transition to the next phase of trials and bring effective new therapies to market faster. Other Parkinson’s MAMS trials are underway around the world.

“We expect to get more failures than successes because of the nature of what we’re trying to do,” McFarthing said. “But we believe that something will come out of this.”

How to get involved in Parkinson’s research:

1.      Participate in PD GENEration.

2.      Join a Parkinson’s trial or study.

3.      Become a Research Advocate.

Advancing Research

Parkinson’s Foundation Genetics Study to Launch in 10 Latin American Countries

A group of researchers talking in front of white board

Parkinson’s disease (PD) affects people in different ways, which is a challenge when trying to develop new treatments and therapies. PD GENEration: Mapping the Future of Parkinson’s Disease, the global Parkinson’s Foundation study that provides genetic testing and counseling at no cost for people diagnosed with PD, is helping researchers overcome this challenge by developing a large PD genetic database for analysis. 

Diversity of data — having genetic information about PD from people across the world — creates a strong foundation to propel research breakthroughs. However, Hispanic and Latino members of the PD community often face distinct barriers to living well with Parkinson’s and contributing to PD research. With that in mind, the Parkinson’s Foundation partnered with the Latin American Research consortium on the Genetics of Parkinson’s Disease (LARGE-PD) to expand the PD GENEration study to new countries.  

This expansion not only strengthens the PD genetics database for researchers to utilize but also furthers the study’s goal of providing genetic counseling and testing to anyone with PD, anywhere in the world. 

Setting Up a Successful Expansion 

Expanding a study to new countries requires considerable time, effort and planning for everything to run smoothly. To assist with such expansion, PD GENEration works closely with LARGE-PD, a PD genetics study that has been underway in Latin America since 2006. 

PD GENE country list

“We conducted surveys to understand the health systems model, which vary by country and institution, and how best to integrate the two studies to get the most impactful data,” said Rebeca De León, Director of Clinical Research for the Parkinson’s Foundation. 

In 2024, five LARGE-PD sites were chosen to begin offering PD GENEration genetic testing and counseling in Colombia, Chile, Mexico, Peru and El Salvador. In collaboration with Indiana University School of Medicine, specialized training programs were designed and implemented at these sites to ensure that genetic results were returned to participants. In just a few months, these sites enrolled 446 new participants and certified 16 clinicians to return genetic testing results. 

 “Access to genetic testing and counseling has been a significant gap in LATAM,” said Ignacio Mata, PhD, LARGE-PD Coordinator and Professor at the Cleveland Clinic. “PD GENEration is a major step toward precision medicine, providing empowering genetic information to clinicians and patients that is needed to deliver the best possible treatment for each individual.” 

Maintaining Momentum 

The Parkinson’s Foundation is enthusiastic about continuing this successful collaboration in Latin America, working to provide genetic testing and counseling to more people with Parkinson’s disease. Soon, PD GENEration will on-board new sites in Argentina, Brazil, Honduras and Uruguay — expanding study access to even more countries. 

“We have established a strong network of collaboration with research centers and local specialists, greatly facilitating the integration of the study in each country,” said Anny Coral-Zambrano, Senior Manager of Clinical Research for the Parkinson’s Foundation. “Today, the process runs smoothly because of the innovative solutions we've implemented.” 

Outreach campaigns in areas around the existing sites are also helping inform local PD communities of the study. “To support recruitment, we have been holding research educational events where we offer the study,” said Rebeca. “Some testing sites even travel to remote areas to provide medical services and offer the study to those who can't get to the centers.” 

PD GENEration’s first-ever event in Mexico City drew 200 attendees, with 82 joining the study at the event. The event featured panels on Parkinson’s, cognition, exercise, and research — and attracted more than 20 doctors. A similar inaugural event in Cali, Colombia, welcomed 215 attendees, offering a Zumba class, cognition games and an expert-led panel on genetics. 

The Future of PD GENEration in Latin America 

With PD GENEration now available throughout Latin America and expanding to more underserved PD communities, more people living with PD can gain valuable insights into their disease  through genetic testing and counseling. As the diversity of genetic information in the PD GENEration database increases, so will the PD research field’s understanding of the disease and lead to impactful treatment breakthroughs. 

Along the way, leaders in PD GENEration’s expansion into Latin America have also learned valuable lessons about engaging with diverse PD populations that will guide effective and impactful outreach for the study in the future. Collaborations between PD GENEration and groups like LARGE-PD help the community move forward, together, toward a world where people with PD can live better through improved care and research. 

Learn more about PD GENEration and enroll today. 

My PD Story

Photo of Stan Goldberg
People with PD

Stan Goldberg

At 80 years of age, I know I won’t be around for “the cure,” but I will still be alive and kicking next week when I may feel embarrassed again about dropping a carton of eggs in the supermarket. God bless the researchers seeking “the cure,” but let’s not forget about those of us living with Parkinson’s disease (PD) who confront our problems daily.

After The Diagnosis

When I was diagnosed with early-stage Parkinson’s three years ago, I wasn’t surprised since symptoms had accumulated over the years. I felt comforted knowing that two words described a plethora of unrelated problems I had experienced — comforted until I searched the literature for ways to manage my PD.

I found a wealth of information on medication selection, dosage, timing, drug interactions and side effects. I was encouraged by the few articles discussing the positive impact of exercise, although most never went beyond the old Nike commercial of “Just Do It!” The same generalities appeared in most diet advice, though it was often contradictory.

But what I craved most of all — a strategy for walking on my favorite trail without falling or how to once again tie tiny flies for fishing — was absent. Even more upsetting was that many suggestions focused on actions to take only after symptoms had worsened. I wondered why it was necessary to deteriorate before anyone offered suggestions for preventing the symptoms from worsening.

A Better Definition of Parkinson’s

As a clinician and university professor for 30 years, I conducted research and developed intervention protocols based more on behaviors, and less on anatomical features. The definition of Parkinson’s can be as practical as those in speech-language pathology. For example, "Parkinson’s disease is a progressive neurological disorder that disrupts signals the brain sends to muscles, affecting both voluntary actions (such as walking) and involuntary functions (like breathing)."

This description accurately characterizes the disorder and highlights the behaviors that could be targeted: the transmission of signals from the brain to the muscles.

Parkinson's As A Messaging Problem

If we consider Parkinson’s as a messaging problem, a whole new area of research emerges, suggesting practical self-care strategies while the search for a cure continues. For instance, since 50-60% of behaviors are automatic, why not research strategies to regain the automaticity that PD has stripped from us? This is the type of behavioral focus in speech-language pathology that enables stroke victims to regain language. Hopefully, this shift will happen while I’m still alive.

Dedicated to Learning

As a retired university professor with clinical experience in communication disorders, I wanted to learn what worked and what failed in managing Parkinson’s. I found the Parkinson’s Foundation’s focus on management aligned with my interests.

I started reading My PD Stories to learn from those with PD and their caregivers regarding what I would most likely face as challenges increased.

I was also very interested in stories about what worked and what did not. Although I have nothing against traditional medicine, I was taken aback by the absence of remedial behavioral strategies to diminish PD symptoms with an over-reliance on medication after the symptoms appear. I was disappointed by the lack of solid data.

I had trouble accepting the commonly heard phrase, “If you’ve seen one PD person, you’ve seen one PD person.” As a retired researcher, to me the phrase indicates the person hasn’t looked hard enough.

Staying Connected Through Volunteering

For eight years, I was a bedside hospice volunteer until my REM sleep disorder forced me to stop.

As a result of volunteering, I learned that I received more than I could ever give. So, when I was asked to become a volunteer for the Parkinson’s Foundation, I immediately said yes.

First as an Ambassador (whenever I run, I wear my “Ask Me About Parkinson’s” T-shirt). Then over time, I helped set up various events, and last year I was an evaluator for community grants.

Learn more about the many ways you can volunteer for the Parkinson’s Foundation as an Ambassador today.

Advancing Research

Fueling Discovery: 9 Research Projects Funded by Parkinson’s Foundation Grants

Researcher working on computer

Taking on a disease as complex as Parkinson’s disease (PD) requires the best scientific minds in the world and the ability to fund innovative ideas. The next Parkinson’s research breakthrough can happen in any lab, at any time. Parkinson’s Foundation research grants exist to decipher this disease and find new ways to stop it from progressing. 

“Many of our grant-funded researchers pursue high-risk projects unlikely to receive federal funding. These projects push the envelope of research and are the kinds of projects the Parkinson’s community eagerly awaits — those that explore the potential for new treatments based on the science behind Parkinson’s,” said James Beck, PhD, Chief Scientific Officer at the Parkinson's Foundation. 

Explore nine Parkinson’s Foundation-funded studies below divided into three critical research avenues:  

  • New movement symptom treatments. 

  • How gut bacteria and PD are related. 

  • How aging impacts PD development and progression. 

9 research studies infographic

Go in depth into each study below:  

Investigating how gut bacteria play a role in PD 

1. Searching for gut bacteria that may lead to PD. 

Chris Smillie, PhD, recipient of a Parkinson’s Foundation Impact Award, is using cutting-edge genetic techniques to find bacterial cells associated with PD, identify how their activity and function may contribute to the disease and how we might be able to target gut bacteria to slow, stop or prevent disease progression.

Learn more

2. How gut bacteria influence levodopa effectiveness. 

Christine Olson, PhD, recipient of a Parkinson’s Foundation Launch Award and a previous Postdoctoral Fellow, is researching a certain type of bacteria in the gut she suspects may impact the effectiveness of levodopa. She’s also investigating whether there are ways to use targeted antibiotics to improve levodopa use.

Learn more

3. Exploring gut health biomarkers as early indicators for PD. 

Trisha Pasricha, MD, recipient of a Parkinson’s Foundation Impact Award, aims to compare the gut biology of people with and without Parkinson’s using new technology to discover the biomarkers of PD-linked bloating and nausea to improve future diagnoses.

Learn more

Searching for treatments for movement symptoms 

4. Using ultrasound stimulation to address freezing of gait.

Amitabh Bhattacharya, PhD, recipient of the Parkinson’s Foundation Postdoctoral Fellowship, is investigating if non-invasive ultrasound stimulation could reduce freezing of gait symptoms without the need for invasive surgery.

Learn more

5. Treating levodopa-induced movement symptoms.

Jeroen Habets, MD, PhD, recipient of the Parkinson’s Foundation Postdoctoral Fellowship, is working to identify brain wave “biomarkers” of levodopa-induced dyskinesia (LID), highlighting regions of the brain that go awry during LID and could be targeted by magnetic stimulation therapy to reduce or eliminate LID completely.

Learn more

6. Improving deep brain stimulation to treat movement symptoms. 

Coralie de Hemptinne, PhD, recipient of a Parkinson’s Foundation Stanley Fahn Junior Faculty Award  is searching for a way to improve deep brain stimulation (DBS) therapy for PD by developing a process that would automatically program DBS devices.

Learn more

Studying how aging impacts PD development and progression 

7. Boosting brain immune cells as a new preventative PD therapy. 

Rebecca Wallings, PhD, recipient of a Parkinson’s Foundation Launch Award, is investigating how aging impairs a certain type of immune cell outside the brain — and how this impairment impacts cells within the brain that contribute to the development of PD.

Learn more

8. Exploring DNA “safety caps” as a source of neuron loss in PD. 

Edward Burton, MD, PhD, recipient of a Parkinson’s Foundation Impact Award, is researching how the damage of telomeres, the protective “caps” on chromosomes linked to aging, may contribute to neuron loss in Parkinson’s.

Learn more

9. Untangling the connections between inflammation, aging and PD. 

Sarah Talley, PhD, recipient of the Parkinson’s Foundation Postdoctoral Fellowship, is studying how “inflammaging,” age-related inflammation, may worsen the spread of alpha-synuclein clumps in brain, with the hope of better understanding how anti-inflammatory therapies could be used to treat people with PD.

Learn more

Meet more Parkinson’s researchers! Explore our My PD Stories featuring PD researchers.  

Videos & Webinars

Expert Briefing: The Latest Advances in Parkinson’s Research and Treatment

April 9, 2025

Join us for an in-depth look at the latest advancements in Parkinson’s disease research and the emerging treatments. This webinar will cover the current medication pipeline, highlighting new therapies and their potential impact on symptom management. Participants will also learn how to identify and participate in relevant clinical studies, staying informed on the cutting-edge research that is shaping the future of Parkinson’s care.

Download Slides

Additional Resources

Presenter

Kevin McFarthing, PhD
Parkinson's Research Advocate, Oxford, UK

Advancing Research

Engaging the Parkinson’s Community in Research: The Path to Better Treatments

Woman sitting at desk working on computer

PD community involvement in trial design outshines recent clinical trial outcomes 

The role of people with Parkinson’s disease (PD) in shaping research has never been more critical than today. “People living with Parkinson’s are experts, they have the lived experience and should be engaged as equal partners in the drug development process,” said Evelyn Stevens, Parkinson’s Foundation Senior Director of Community Engagement.  

One avenue of engagement is the Patient Engagement Council for Parkinson’s Research (PECPR). Established in 2021, the PECPR has worked to ensure that the Parkinson’s community has a seat at the table in drug development. A collaboration between UCB, the Parkinson’s Foundation, Parkinson’s UK, and five people living with Parkinson’s, the council believes patient insights should guide research priorities.  

The goal of the PECPR was to engage those with PD in research and trial design, guiding development toward results that will most impact and benefit their lives. The council: 

  1. Developed a “playbook” for including people with Parkinson’s feedback, ensuring that medicines are designed to address what matters most to the PD community. 

  1. Prioritized accessibility and inclusivity in all stages of treatment research, so that treatments are developed with the wide diversity of the PD community in mind. 

  1. Advanced the field of disease-modifying therapies for PD, which seek to slow, stop, or even reverse the disease progression rather than simply treat its symptoms. 

The council’s efforts were recognized when it won a 2024 Made with Patients award from the Patient Focused Medicines Development, underscoring the impact of patient-driven collaboration. 

PECPR played a key role in shaping a recent clinical study called ORCHESTRA, testing the efficacy of the pharmaceutical company UCB’s drug, minzasolmin. Unfortunately, in December 2024, UCB announced the study did not meet its efficacy goals. Days later, another pharmaceutical company, Roche, announced similar results — their intravenous PD drug called prasinezumab also missed the primary endpoint, but suggests possible benefit in early-stage PD.  

Both drugs were designed to slow the progression of PD by targeting a protein called alpha-synuclein normally found in the brain. When this protein is mishappen and builds up in the brain it disrupts brain function and leads to PD symptoms. Neither drug significantly slowed disease progression in trial participants when compared to the participant group that received a placebo.  

“Developing effective disease-modifying PD treatments comes with numerous challenges,” said Maggie Caulfield, PhD, Director of Research at the Parkinson’s Foundation. “One concern is that a therapy needs to reach the right area in the brain, get into the right cells, and interact with a particular molecule — all in a system where cells in the brain are already unhealthy.” 

While the minzasolmin trial did not yield the hoped-for results, PECPR’s mission remains unchanged: to push for research that directly addresses the real needs of people with Parkinson’s.  

Looking ahead, PECPR is focused on expanding patient engagement strategies, refining accessibility in research, and continuing to advocate for treatments that go beyond symptom management to fundamentally change the course of Parkinson’s.  

Strengthening the Odds of Finding New Disease Modifying Therapies 

While trial failures for disease modifying therapies for PD are disappointing, they ultimately provide researchers with new, valuable data that will guide the next round of treatments. Researchers can utilize data (positive and negative results) to help overcome previous biological hurdles.  

“Parkinson’s researchers will keep trying and tweaking until we have the next breakthrough,” said Dr. Caulfield, “There are all kinds of different ways that researchers and clinicians are trying to reach disease related targets, we just have to keep pushing and eventually something will work.” 

One area where patient engagement is vital is in genetics research. Understanding the genetic factors behind PD can help researchers develop more targeted, effective treatments. Pharmaceutical companies are already partnering with people with PD to improve their clinical trials that are based on genetic ties to PD. 

Studies like the Parkinson’s Foundation PD GENEration: Mapping the Future of Parkinson’s Disease are advancing this effort by offering free genetic testing and counseling to people with PD. By identifying genetic variants linked to PD, researchers can uncover new pathways for treatment — bringing the field closer to personalized medicine, where therapies can be tailored to a person’s genetic profile. 

“There is a lot of hope in understanding Parkinson’s through genetics and leveraging study data to find the next disease modifying treatment,” said Evelyn. 

Patience, Perseverance and Continued Progress 

Every person with PD experiences unique symptoms and disease progression. These differences can be related to genetics, environment, age or other factors, all of which make finding new, effective disease-modifying therapies for PD a daunting task.  

As PD research moves forward, the involvement of the PD community is invaluable and critical. Groups like PECPR and Parkinson’s Foundation research advocates ensure that the experiences of those with PD guide treatment development in ways most beneficial to the PD community.  

“It’s an exciting time to see so many researchers and industry partners wanting to listen and learn from those living with Parkinson’s,” said Evelyn. “That’s what community engagement is all about — it’s a collaborative process where we combine our experience and expertise to improve the health of those living with Parkinson’s. That’s what will lead us to a cure for PD” 

Learn More 

The Parkinson’s Foundation works to improve care for people with PD and advance research toward a cure. 

  • Learn about PD GENEration: our global genetics study that provides genetic testing and counseling at no cost for people with Parkinson’s. 

Advancing Research

Neuro Talk: What’s Next for PD Research

Parkinson’s disease (PD) research has changed drastically over the last few decades. In the past, scientists approached PD research more broadly, often applying general neurological concepts rather than focusing specifically on the unique aspects of PD itself. Today, the field has advanced to include more specific treatments and interventions tailored to address the symptoms and underlying causes of PD directly, offering new possibilities for more effective care and management. 

Dr. James Beck, Chief Scientific Officer of the Parkinson’s Foundation, alongside a few of the Parkinson’s Foundation research grantees discuss the advancements in PD research, how the field has transformed and where it is headed in the future. 

My PD Story

John Rosiak rock climbing
People with PD

John Rosiak

When I was diagnosed with Parkinson’s disease (PD) in the fall of 2023, my response was to go on a crash course to learn as much as I could about this “progressive” disease and see what action I could take.  

I was familiar with the disease, trying to help support my brother’s journey with PD the last 10 years of his life. I saw his classic symptoms of slowness, falling, freezing, swallowing and speech problems, and more. Yet, he never really had tremors, and his mind was sharp until the end. I didn’t understand just how different PD can be in different people. 

A few years ago, I was constantly fatigued and losing confidence in my balance. I went to my primary care physician (PCP), who sent me to different doctors to find the underlying problem. These referrals included a neurologist, who ordered an MRI, and did the standard “clinical assessment.” She said I didn’t have PD.  

The cardiologist, sleep study, endocrinologist, and ear, nose and throat (ENT) specialists, all found no answers to my symptoms. So, back to the PCP, who told me to avoid the heat, and referred me to another neurologist, which took months to get an appointment. 

This neurologist made the clinical diagnosis of Parkinsonism. To learn more, she offered me a choice of a skin biopsy to see if there was alpha synuclein abnormality, or a DaTScan, to see if there was any dopamine deficit. I chose the former. When the synuclein skin biopsy test came back abnormal, that “supporting information” warranted the diagnosis of PD in December of 2023, even though symptoms were mild. 

I immediately went to clinicaltrials.gov to see what studies I should sign up for, thinking I could learn more about my new situation, and how to get a handle on it. I am fortunate to live in the Washington, DC area, with its abundant biomedical centers and institutions. I applied to the Parkinson’s Progression Markers Initiative (PPMI) study, which included a DaTScan at Johns Hopkins Parkinson's Disease and Movement Disorders Center, which is also a Parkinson’s Foundation Center of Excellence. 

My neurologist later read that DaTScan, which showed an overall loss of dopamine in my brain, and a more significant loss of dopamine in the right brain hemisphere. This scan helped explain why I had less coordination and strength on the left side of my body. The positive DaTScan result provided further “supporting” information for the diagnosis of PD. 

I signed up for the National Institute of Health’s (NIH) Phenotype/Genotype Correlations in Movement Disorders, run out of their Parkinson’s Clinic. My wife and I spent a day there meeting with neurologists who tried to understand my case, given the mild symptoms. They also drew blood to test the full genome to check for PD-related genes.  

I also signed up for the PD GENEration: Mapping the Future of Parkinson’s disease genetic testing study, which collected my genes by a buccal (cheek) swab. The results were back in one month; they were negative for any of the seven genes related to PD. That testing came with excellent genetic counseling to understand what the results meant for my family and me. Likewise, NIH’s genetic testing “did not detect disease-causing variants.” I was interested to know if there was a genetic connection because I figured that might tell me something about possible disease progression, and preferred treatments.  

There was one more study I signed up for right away. In December of 2023 I contacted Marymount University in VA, about participating in their study about the effects of rock climbing on PD. I signed up for data collection in January, which involved 10 baseline measures that assessed agility, balance, grip strength and general well-being. Then I had to rock climb 24 times in 12 weeks.  

I finished all 24 climbs by March. I then repeated the 10 tests I took in January, before climbing. I didn't see the comparison results (it's a study, so it was “blind”), but I really feel that I did as well on the posttests, or even better, after all those climbs, than on the pretests back in January.  

I never did rock climbing before, but did many other physical activities over the years. I knew that exercise was so important for PD, as well as for general health. In January I told my wife, "I hope I like rock climbing because I just signed up to do 24 climbing sessions in 3 months!" After climbing for several months for the study I have to say I don't like rock climbing — I love it!  

Exercise in the form of climbing has changed my life. After every session my body feels tired and sore (which, frankly, I feel all of the time with PD). But I liken that feeling to those good, tough workouts from playing sports for years. Walking out of the climbing gym I feel better. That natural dopamine my brain is short of might be kicking in because of the climbing. I walk with greater confidence. My attitude toward life is positive and focused. I forget about the PD. 

I continued to climb the rest of the year (in fact, I now work at the gym instructing others). In addition to climbing twice a week with my peers with PD in the UpENDing Parkinson’s program I try to help support UEP’s growth so more climbers in more gyms can participate in this remarkable exercise therapy.  

In addition, I completed the Parkinson’s Foundation Ambassador training, and was also trained as a Research Advocate.  I continue to look for, and participate in a variety of studies, many of them online, run by various universities or institutions trying to understand various issues related to PD. 

I believe research is so important to help people better understand the disease and, more importantly, what we might be able to do about it. 

My goal is to be as active as I can physically and mentally. Having the diagnosis has also prompted more reflection about life. While not sure what the future will bring, I am grateful to have found a “power through weakness.” Because of this experience, I have a new perspective, and hope for the future. There are so many resources to help those living with PD. 

Explore how you can get involved in Parkinson’s research today. Visit our Join A Study page and learn more about our Research Advocate program.   

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