My PD Story

Fuu-Jiun Hwang headshot
Researchers

Fuu-Jiun Hwang, PhD

2024 Postdoctoral Fellowship 

Exploring and Unlocking Motor Memory in Parkinson’s 

Despite how simple daily movements like walking, using utensils, or riding a bike may seem, they require the precise and instantaneous activation of complex networks of neurons. As we learn to perform these types of movements, the brain stores these neuronal activation patterns, allowing us to utilize them seamlessly in the future, making the movements feel effortless. For people with Parkinson’s disease (PD), that effortlessness diminishes as common PD symptoms make even simple movements challenging. 

Fuu-Jiun Hwang, PhD, recipient of a Parkinson’s Foundation Postdoctoral Fellowship, aims to discover whether those motor memories are still present in the brain but have become inaccessible in PD, and if so, how they can be reactivated. 

The scientific term for how the brain “memorizes” physical actions is motor learning. This process results in the formation of motor memory engrams, which are the specific activation patterns and timing of neurons needed to perform a memorized action. 

Motor memory engrams are like songs played by an orchestra. Specific musicians (neurons) must play the right notes in the right order (activation patterns) to perform the song. After enough practice, when the conductor asks the orchestra to play a certain song (a movement), they know exactly what to do (effortless engram utilization). 

Dr. Hwang, working in the lab of Jun Ding at Stanford University, will use advanced neurochemical tools in mouse brains to visualize and map the motor memory engrams associated with a forelimb-reaching task, a well-established motor learning behavior task in mice. He will then induce PD-like brain disruption in the mice and observe whether the same engrams activate when the mice perform the learned task, or if the disease alters the neuron patterns involved. Additionally, Dr. Hwang will explore whether administering levodopa — the most potent PD medication — can restore the original engrams altered by the disease. 

Previous neuroscience research has shown that repeated practice and performance of actions rewires the brain to reinforce and improve the associated motor memory engram, a phenomenon known as synaptic plasticity. Dr. Hwang plans to take his experimental model further to examine whether synaptic plasticity associated with the motor engram is also impacted by PD. 

The discoveries from these experiments will help Dr. Hwang and other PD neuroscientists better understand how motor memory and learning are affected by Parkinson’s disease, and what potential treatments could be developed to address movement symptoms at their source. 

Reflecting on the significance of the Parkinson’s Foundation grant, Dr. Hwang said, “Receiving this award is crucial for supporting my research on motor engrams and their application to Parkinson’s disease. Ultimately, this award will help me contribute to the understanding of PD and develop novel therapeutic strategies, potentially improving the lives of individuals affected by this debilitating disease.” 

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

My PD Story

Rebecca Wallings headshot
Researchers

Rebecca Wallings, PhD

2024 Launch Award  

Giving Brain Immune Cells a Boost as a New Preventative Parkinson’s Therapy 

Immune cells play a critical role in protecting our bodies from infection and disease. As we slow down with age, these cells also become less effective. Aging is the greatest risk factor for Parkinson’s disease (PD), so learning how immune cells are affected by aging and how PD-related mutations may accelerate such impacts is of keen interest to researchers.  

Rebecca Wallings, PhD, a 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.  

Immune cells can be divided into two groups:  

  1. Innate immune cells that are the first responders to injuries and exposures. 

  1. Adaptive immune cells that “learn” from past infections to provide enhanced protection from repeat threats in the future.  

These two types of cells communicate and collaborate in complex ways to help the body recover quickly and stay healthy.  

Dr. Wallings, working in the lab of Dr. Malu Tansey at the University of Florida, has previously found that a PD-related mutation causes innate immune cells outside the brain in to become “exhausted,” unable to respond to infections or other inflammatory alarms in the body. Since these immune cells are so involved with other cell types to keep the brain healthy, this aging-related exhaustion likely has hidden causes and consequences worth exploring. 

In her upcoming experiments, Dr. Wallings will use human cell samples from donors with and without PD to see if innate immune cell exhaustion prevents them from being able to communicate with healthy adaptive immune cells. She will then utilize mice with and without PD-related mutations to better understand how this immune cell exhaustion plays into the progressive neurodegeneration common to PD, measuring and comparing brain health over time. 

“What the Parkinson’s Foundation has done with this award is show me that they are willing to invest in me, and they believe in the potential impact my research may have on the field and, most importantly, on patients’ lives.” 

There is evidence that immune cell exhaustion is due to malfunctioning mitochondria, the powerhouses of the cells that provide the energy they need to perform their functions. Delving into this further, Dr. Wallings will also test if reinforcing or repairing these immune cell mitochondria could have potential to serve as a future preventative treatment option for PD. 

Asked about the impact of her research and how this award supports it, Dr. Wallings said, “My research is at the forefront of a potential paradigm shift in the neurodegeneration field and may change the way researchers think about the role of the immune system in PD.”  

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

Fact Sheets

Veterans and Parkinson’s

More than 110,000 veterans with Parkinson’s disease (PD) receive care through the U.S. Department of Veterans Affairs (VA). The Parkinson’s Foundation is here to help veterans and their loved ones live well with PD. To find resources tailored to the veteran community, visit Parkinson.org/Veterans or call the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (1-800-473-4636).

Medical Care and Treatment

Many U.S. military veterans with Parkinson’s have access to specialized medical care and financial assistance through the VA. The VA treats veterans with Parkinson’s through medical centers known as Parkinson’s Disease Research, Education & Clinical Centers (PADRECCs). Visit www.parkinsons.va.gov or call 1-800-949-1001 x205769 to learn more about how to access care through the PADRECCs and their Associated Sites. To apply for VA healthcare, visit www.va.gov/health-care/how-to-apply or call 1-877-222-8387.

Agent Orange and Toxic Exposures

In some cases, a Parkinson’s diagnosis can be linked to Agent Orange or other toxin exposure from a veteran’s military service. Agent Orange was a powerful herbicide used in Vietnam from 1962 to 1975, but was also used and stored in other locations. Veterans may be eligible for a free environmental health registry evaluation, disability compensation and other VA benefits. To learn more, visit Parkinson.org/Veterans or call the Veteran Benefits Administration at 1-800-827-1000.

Veterans Benefits

Veterans living with Parkinson’s may qualify for financial benefit programs to help cope with financial challenges. Service members, veterans and families can apply for various VA benefits by:

  • Applying online at www.eBenefits.va.gov.
  • Working with an accredited representative or VSO. Federal law prohibits attorneys and others from charging a fee to assist with the VA application.
  • Calling the VA’s toll-free hotline at 1-800-827-1000, Monday-Friday 9 a.m. to 9 p.m. ET.

Caring for a Veteran with Parkinson’s

The care partner experience is unique to every individual. The Parkinson’s Foundation and VA have resources specially designed for those caring for a veteran with Parkinson’s. Regardless of whether you are early in the journey, caring from afar or supporting a loved one in the advanced stages of Parkinson’s, we have the resources to help. Learn more at Parkinson.org/Veterans.

Hospital Safety

Every person living with Parkinson’s should be prepared for a possible hospitalization including veterans and their care partners. Visit Parkinson.org/HospitalSafety to learn more and order or download your Hospital Safety Guide.

Mental Health

Mental health concerns like depression and anxiety are common in people with PD. They can be the result of living with a chronic condition, but they can also be a symptom of the disease itself and changes in the brain. Be aware of these symptoms and do not hesitate to talk to your doctor. Keep the Veterans Crisis Line number nearby, just in case: dial 988, then press 1 or text 838255.

My PD Story

Tru Niagen selfie
Family Members

Tru Niagen

Finding Strength, Hope, and Purpose 

When I think of the words courage and strength, I think of my beautiful mom. Her name is Deanna and at her wise age of 77, she still manages to find ways to inspire me. She was diagnosed with Parkinson’s disease (PD) a few years ago after my parents retired and moved to a little beach town in the coast of Ecuador. But you never know what being diagnosed really means until you actually face it. 

The first time I saw my mom after her diagnosis, PD became very real. Seeing her unable to control the tremors and drag her feet made her seem so frail. I felt hopeless but my mom doesn’t give up easily and every day she finds ways to feel like herself. 

Overcoming the Challenges 

To say that witnessing my mom’s battle with PD from thousands of miles away is difficult, is an understatement. I only see my mom once a year and through the physical distance is challenging, our emotional bond has only gotten stronger. 

I’m grateful for the small ways I can support her even from afar. Despite everything she’s endured since her diagnosis, my mom refuses to let Parkinson’s define her and embraces every day with a positive attitude. She shares her story to bring awareness and help those who also need the strength not to give up. 

My Advice

I am not equipped to offer advice to anyone newly diagnosed with Parkinson’s, but as someone watching her mom manage PD, I can say that showing kindness and patience can be the best act of love. Simple things like signing your name, walking and even talking can be difficult for people with PD. When I’m with my mom I do things at her pace. When we’re on the phone, I take the time to really listen. 

Proud of Our Supportive Community 

My employer ChromaDex, makers of Tru Niagen, is a pioneer in healthy aging research and a proud sponsor of the Parkinson’s Foundation and I love how supportive they’ve been of my involvement in Parkinson’s initiatives. Working at ChromaDex and having direct access to scientific research on NAD+ has helped me better understand the science behind cellular health and how lifestyle stressors may affect the way we age. It’s given me a new perspective and further motivation to find ways to help my mom. 

Through the Parkinson’s Foundation, my mom is able to use their online mobility and education classes since they’re available in multiple languages, including Spanish. These resources have proven to be especially valuable for my mom. 

My friend and colleague Suhad, whose father was also affected by PD before his passing in 2015, has joined me as a Parkinson’s Champion to raise awareness and funds for Parkinson’s research. As we prepare for our 10K run at the Disneyland Halloween Half Marathon Weekend event in Anaheim, CA, we are most appreciative for all the physical abilities we have that allow us to run and honor our parents today.

Explore the many ways you can support the Parkinson’s Foundation today!

My PD Story

Michael Citrin headshot
People with PD

Michael S. Citrin

After living with Parkinson’s disease (PD) for more than 30 years, I know how it impacts a person’s life and their loved ones.  

I first noticed tremors in my arm while participating in a fox hunt. It took more than eight years and several specialist visits to finally confirm my symptoms were a result of Parkinson’s disease.  

While my journey has not always been smooth, I’ve found happiness in keeping PD at bay by taking control of my treatment and working to overcome the physical and emotional effects of Parkinson’s. I’ve learned that viewing life through Parkinson’s can help you cherish each positive moment and work toward fulfilling your dreams. 

After all I’ve been through with this disease, I want to offer some advice that has worked for me to manage Parkinson’s. I recently wrote “Thirty Years with Parkinson’s Disease The Unscientific Truth” as a free study or self-help guide, using my life experience as an example. If you are interested in reading it, please contact Kelly Austin at kaustin@parkinson.org. Here are some of the thoughts I share in it: 

  • Create an action plan that includes several small steps you can take on gradually. 

  • Be your own advocate. Ask questions and don’t be afraid to question your treatment plan. 

  • Find a quarterback in a doctor, someone who can help you navigate PD. 

  • Determine what matters most to you and those you care about. Use this as a guide for your care plan so that you can achieve your goals and pursue your interests. 

  • Add lots of exercise and mental stimulation into your life to keep your brain and body working. Don’t crawl into a fox hole and never get out. 

I would not have been able to fight this disease for so long if it were not for the support of my late wife, Adrienne, my family and my doctor. For more than 20 years, I drove 100 miles to see Dr. Lucien Côté, at Columbia University Irving Medical Center, a Parkinson’s Foundation Center of Excellence. He was an incredible man and doctor. He spent so much time with each of his patients, asking them questions and taking meticulous notes and forming treatment plans that were tailored to each patient. I am forever grateful to him, and I miss his kindness, comfort and wisdom. 

Explore Parkinson’s Foundation resources for the PD topics and symptoms that matter most to you right now.
I want to learn more >>

I am also grateful for organizations like the Parkinson’s Foundation. Parkinson’s is not episodic, but I’ve found the medical world is set up to treat things in snapshots. That is not how Parkinson’s works, so people are often stuck looking for resources and support themselves. The Parkinson’s Foundation is wonderful because it provides education and helps people navigate the disease to live well. As proof of my gratitude for their educational work, I have made a substantial planned gift to the Parkinson’s Foundation. 

Michael Citrin biking

I firmly believe every person should have a life, even if they are fighting a disease like PD. I’m very protective of “me” and I don’t let the disease control me. I prioritize exercise and singing in my church choir. I’ve traveled and spent many years riding my motorcycle around the country with my wife. Today I ride a tadpole-configured, fat boy recumbent trike. I have never run from PD. I embrace it and the surprises it brings to my life. I hope these tips help others do the same. 

Make a lasting impact with a planned gift to the Parkinson’s Foundation. Learn more at Parkinson.org/PlannedGiving.

Podcasts

Episodio 31: Alucinaciones y delusiones en el Parkinson

Alrededor de un 20-40% de las personas con Parkinson experimentan algún tipo de alucinación o delusión en algún momento de su recorrido por la enfermedad de Parkinson (EP). Aunque en la actualidad los estudios no indican que la comunidad hispanohablante de la EP corra un mayor riesgo de desarrollar estos síntomas, sigue siendo importante conocer los posibles signos para estar mejor preparado para manejar situaciones de emergencia. Las alucinaciones y delusiones en sí pueden asustar, pero cuando se combinan con otros síntomas del Parkinson, pueden ser aún más problemáticas. 

En este episodio, hablamos con la Dra. Blanca Valdovinos, neuróloga especialista en trastornos del movimiento del Centro Médico de University of Rochester. Ella comparte su experiencia de primera mano en trabajar con personas con Parkinson, basándose en el tiempo que pasó dirigiendo una clínica semanal para sus pacientes hispanohablantes con afecciones neurológicas. Explica qué son las alucinaciones y delusiones, destaca sus diferencias y proporciona ejemplos de cómo pueden presentarse en una persona con Parkinson. Ofrece orientación para reconocer las primeras señales y comparte cómo los familiares y aliados en el cuidado pueden responder mejor si su ser querido experimenta una alucinación o delusión. 

Publicado: 10 de septiembre de 2024

Advancing Research

Meet a Researcher Using Ultrasound Stimulation to Address Freezing of Gait

Bhattacharya-Meet-the-Researcher

Freezing of gait is a common Parkinson’s disease (PD) symptom where a person experiences the temporary, involuntary inability to move. This can make simple activities, like walking across a room, incredibly challenging and dangerous due to the risk of falls. Unfortunately, common Parkinson’s medications often don’t alleviate these freezing episodes. This has led researchers like Amitabh Bhattacharya, PhD, from the University Health Network (UHN) in Canada, to explore new treatments. 

What is a transcranial ultrasound stimulation (TUS)?

  • Transcranial: “Through the skull,” noninvasively 
  • Ultrasound: A high-frequency soundwave safe for brain stimulation 
  • Stimulation: The use of the ultrasonic soundwaves to activate neurons 
Bhattacharya-Blog

Dr. Bhattacharya is a recipient of a 2024 Parkinson’s Foundation Postdoctoral Fellowship, and will use this support to study how TUS can be utilized to help people with PD create personalized non-invasive treatments that targets freezing of gait. 

“We will apply focused ultrasound waves to a specific part of the brain known as the pedunculopontine nucleus (PPN), a key region that helps control movement,” he said. “By precisely stimulating the PPN, we hope to make walking easier for people with Parkinson’s.” 

Participants, recruited with help from the Toronto Western Hospital Movement Disorders Clinic, a Parkinson’s Foundation Center of Excellence, will first undergo a high-resolution brain scan to create a detailed map of their brain, focusing on the PPN. This personalized brain map will guide the ultrasound device to ensure that the sound waves are precisely directed to the right spot.  

Each participant will receive three personalized TUS treatments, using different stimulation protocols to determine the most effective approach. To evaluate how well each protocol works, participants will be assessed before and after each session using tests that measure their walking ability, mental function, and brain activity. 

Finally, Dr. Bhattacharya will have enough scientific evidence to determine the ability of TUS in improving freezing of gait, as well as how to keep improving the technique to make it even safer and more effective. 

Dr. Bhattacharya is confident in this treatment’s potential to improve the lives of those experiencing PD-associated freezing of gait. “Targeting the PPN through non-invasive means such as TUS holds immense promise,” he said. “The ability of PPN-TUS to modulate these essential neural circuits could help restore a degree of normal motor function, thereby mitigating symptoms such as freezing of gait in PD.”  

The goal of this study is to explore TUS as a practical and effective treatment for freezing of gait in Parkinson’s Disease. TUS is a non-invasive approach that could offer a quicker, more accessible, and cost-effective option for patients. By avoiding the complexities and recovery time associated with surgical procedures like deep-brain stimulation (DBS), TUS has the potential to enhance mobility and improve quality of life. The accessibility of this new potential treatment is top-of-mind for Dr. Bhattacharya.  

“PPN-TUS offers a non-invasive, cost-effective alternative with fewer potential complications compared to PPN-DBS,” he said. “This study could transform the way we help Parkinson's patients regain their mobility. If successful, this non-invasive method may eventually become a standard treatment, offering improved quality of life for individuals with Parkinson’s disease.” 

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

My PD Story

Dr. Reversa Joseph headshot
Health Professionals

Dr. Reversa Joseph

My journey into medicine began with a passion for solving problems and seeking answers, which naturally led me to neuroscience. However, witnessing my father, a Vietnam veteran, struggle with Parkinson’s disease (PD) became the pivotal moment that directed me toward Neurology and ultimately specializing in Movement Disorders. This deeply personal experience profoundly shaped my life and my family’s.

One unforgettable experience was transitioning my practice from an academic institution to the U.S. Department of Veterans Affairs (VA) to address the unmet needs of veterans with movement disorders.

Driven by my father’s condition, this shift was both uplifting and challenging. This significant transition was driven by a clear unmet need and my desire to serve our veterans, honoring my father’s condition and his service to our country.

At the VA, I developed and lead a Movement Disorders Clinic, directing a Multidisciplinary Care Team to provide comprehensive, integrative care to veterans with Parkinson’s disease and other neurological disorders. This endeavor has been deeply fulfilling and reinforced my commitment to serving vulnerable populations and improving healthcare access.

My involvement with the Parkinson's Foundation began in 2018 as a board member for the Great Lakes Chapter. Throughout the years, I have supported the Foundation by giving various presentations on topics such as PD 101, Women and Parkinson's Disease, and Integrative Therapies and PD. I also participate in Moving Day with my team, Vets on the Move.

I am particularly proud of our efforts to mitigate health inequities in people living with Parkinson’s through targeted and tailored training in research advocacy. One of my most rewarding contributions has been to help develop a novel Learning Institute using culturally responsive pedagogy to train African Americans living with Parkinson’s and their care partners to collaborate with researchers and scientists as primary partners in the drug development process.

Additionally, I have given national lectures for the Parkinson’s Foundation to raise awareness about Parkinson’s disease and the Black community, addressing issues such as late and misdiagnosis, treatment and overall care. I work to provide a framework on how to mitigate these disparities. I have also participated in various podcasts to raise awareness that Parkinson’s also affects African Americans.

Volunteering for the Parkinson's Foundation is more than just a commitment; it’s a deeply personal mission. Each effort, whether it’s a presentation, a lecture, or a podcast, is a step towards improving the lives of those affected by Parkinson’s, honoring my father’s struggle and ensuring that every person with PD receives the comprehensive, integrative care they deserve.

The Parkinson’s Foundation has been a beacon of hope and support, and through my volunteer work, I aim to give back to an organization that tirelessly works to better the lives of so many. My volunteer work is driven by a desire to make a tangible difference, to support an organization that supports so many, and to contribute to the fight against Parkinson’s disease with all the dedication and passion it deserves.

Explore the many ways to volunteer with the Parkinson’s Foundation. Fill out our volunteer interest form today.

Raise Awareness

Reach Further Campaign Exceeds Fundraising Goal

Thanks to our wonderful donors and community, we are excited to announce that our Reach Further fundraising campaign exceeded its goal early. In just three years, we raised $38.4 million to accelerate progress in Parkinson’s disease (PD) research, improve care and increase access to quality-of-life programs.

“Exceeding our campaign goal is a huge milestone, and we are so grateful to every person who made this campaign a priority,” said John L. Lehr, president and CEO of the Parkinson’s Foundation. “These funds allow us to accelerate our mission and create lasting impact in the lives of people with Parkinson’s.”

Launched in 2021, the Reach Further campaign helped fund PD programs and provide resources to local communities across the nation, providing support to people with Parkinson’s and their loved ones.

Reach Further Impact Infographic

Here are four of the ways your support of the Reach Further campaign helped us impact people with Parkinson’s:

1. Recruited more than 15,000 participants for PD GENEration: Mapping the Future of Parkinson’s disease, our landmark genetics initiative. We also expanded access to the study to Black and African American communities, as well as Spanish-speaking communities in the U.S. and throughout the Western Hemisphere.

Thanks to this expansion, more people with Parkinson’s know if they have a genetic form of PD and have received genetic counseling to understand their results. So far, the study has identified that 12.7% of participants have a genetic form of PD.

Increasing the number of people participating in PD GENEration, and ensuring we are testing a diverse population, an accelerate relevant clinical trials, bringing us closer to a better understanding of PD and identifying potential new treatments.

Enroll Now

2. Launched Parkinson’s Virtual Biotech in partnership with Parkinson’s UK to build a pipeline of new drugs exclusively aimed to target Parkinson’s.

Taking a new drug from an idea to becoming an available medication can take years and upwards of one billion dollars. The Parkinson’s Virtual Biotech works to accelerate that timeline by building a pipeline of new drugs exclusively for Parkinson’s.

The Parkinson’s Virtual Biotech is directly investing in medications that either address symptoms or aim to slow, stop or prevent the disease altogether.

Discover the drugs in development right now

3. Expanded our Global Care Network, adding 18 new Center designations to provide better, more attainable care.

Finding the right care team can improve the health and quality of life of a person with Parkinson’s. Our Global Care Network aims to make high-quality care accessible to more people with Parkinson’s, while also providing health professionals the chance to advance their skills and share their knowledge.

Through expanding our Global Care Network, we are taking one step closer to our goal of ensuring all people with PD have access to the equitable and quality care they need, when and where they need it.

Find expert care near you

4. Awarded $4 million in community grants across the U.S., addressing critical needs such as exercise, mental health and care partner support.

Woman and man dancing during a class

From dance classes to Rock Steady Boxing workout classes, local PD programs empower people with Parkinson’s and help them find community support. Through our community grants, we are proud to support the dedicated professionals and volunteers offering vital programs and resources to people with Parkinson’s around the country. These programs foster local Parkinson’s communities and help people live better with PD.

Find a program in your community

THANK YOU for helping us make life better for people with Parkinson’s through your support of the Reach Further campaign. These impact-driven achievements could not have happened without your support. Your generosity continues to elevate our research, care and education programs to new heights.

Discover new ways you can help the Parkinson’s community. Learn more about the Parkinson’s Foundation at Parkinson.org or 1.800.4PD.INFO (1-800-473-4636).

Podcasts

Episode 170: Introducing Our Hospital Safety Guide

A hospital stay can be a stressful situation for everyone, whether you are the person receiving care or the support person providing comfort.  People with Parkinson’s (PD) are at a higher risk of hospitalizations, so it is crucial to be prepared ahead of time for when the situation arises. The Parkinson’s Foundation recently created the Hospital Safety Guide, which is the updated and improved version of the former Aware in Care kit. The Guide incorporates information from the kit, but now highlights the “Five Parkinson’s Care Needs”, which is a tool for communicating your needs and priorities with hospital staff. It also includes a Hospital Planner checklist with step-by-step instructions on how to create a hospital “go bag” for emergencies. The Guide provides infographics and real-life examples from people with Parkinson’s and loved ones who have solved common problems relating to their PD when in the hospital. 

In this episode, Annie Brooks, Director of Strategic Initiatives at the Parkinson’s Foundation, discusses features of the new Hospital Safety Guide and how best to use it.

Released: July 9, 2024

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