Raise Awareness

9 Impactful Goals You Helped Us Achieve in 2021

2021 was an exciting year for the Parkinson’s Foundation. Thanks to YOU we were able to fund more Parkinson’s disease (PD) research and community programs than ever before!

Here are nine ways we made a positive impact in 2021:

1. Reached 3,000 volunteers

We rely on the energy, skill and passion of our volunteers to advance research toward a cure. This year we reached an impressive 3,000 volunteers who want to help us beat Parkinson’s — from our Parkinson’s Champions to our Moving Day volunteers. Thank you!

Get involved today

2. Invested Additional $10 Million for Research, Care and Education Programs

This investment includes expanding PD GENEration to the Hispanic and Caribbean communities, and $2 million in funding across 143 community grants that support educational and wellness classes.

Find a program near you

3. Shared Key Parkinson’s Genetics Findings at American Academy of Neurology Annual Meeting

This year, we participated in the American Academy of Neurology Annual Meeting, presenting on PDGENEration’s evolution to at-home genetic testing during the COVID-19 pandemic.

Check if you are eligible

4. Surveyed the PD Community On Pressing Topics

In the U.S., cannabis has become more widely available for medical and recreational use. Until this survey, there was insufficient data about the attitudes towards, and experiences with cannabis use among those living with PD.

Check out our survey findings

5. Funded Critical Parkinson’s Research

This year we invested $4.3 million in 29 grants to accelerate cutting-edge Parkinson’s research. Each of these studies has the potential to lead us to the next breakthrough PD therapy or treatment.

Check out the grants we funded this year

6. Published New Veterans Resources and Events

Together, with the U.S. Department of Veterans Affairs (VA), we hosted new online events created for veterans with Parkinson’s and care partners. We also published new tools and information for veterans, such as our new FAQ guide for veterans.

Visit Parkinson.org/Veterans today

7. Launched $30 Million Multi-Year Fundraising Campaign

This fall, we launched Reach Further, a four-year fundraising initiative that will raise an additional $30 million to accelerate Parkinson’s research and increase access to health care and quality-of-life programs.

Help us Reach Further

8. Released new online Care Partner Program

Our new Care Partner Program is a series of self-paced online courses designed with care partners in mind. Courses address top caregiving topics, from preventing caregiver burnout to nutrition.

Find a course now

9. Brought Local Communities Together at Moving Day

We began with virtual and drive through Moving Day events and ended the year strong with safe in-person events. All 47 events brought our local PD communities together.

Sign up for a 2022 Moving Day today

Help us further our reach and impact in 2022.

Donate today.

My PD Story

Senator Johnny Isakson
People with PD

Senator Johnny Isakson

Senator Johnny Isakson passed away in December 2021. The Parkinson's Foundation is grateful for his commitment to the organization and his contributions to make life better for people with Parkinson’s and their families.

 

Former Senator Johnny Isakson (R-GA) lived by the motto that there are only two kinds of people in the world: friends and future friends.

The Parkinson’s Foundation is grateful to have counted him as a friend.

Senator Isakson, who lived with Parkinson’s disease (PD) and retired in 2019 after 45 years of public service, recently increased his longtime commitment to championing research toward a cure through a leadership gift to the Reach Further campaign. This new, four-year fundraising initiative will raise an additional $30 million to accelerate Parkinson’s research and increase access to healthcare and quality-of-life programs, and $20 million is earmarked to accelerate new Parkinson’s treatments and investigate early-stage drug discovery and development.

“You can’t beat what you can’t understand, but you can beat anything you understand and commit yourself to,” said Senator Isakson. “The Parkinson’s Foundation is taking aggressive steps towards a future without Parkinson’s disease through the Reach Further campaign, and I am proud to support these ambitious plans.”

In his 2019 Senate resignation letter, Senator Isakson described his time in office as “the honor and privilege of a lifetime.” Senator Isakson was disappointed to have to leave the Senate in the middle of his third term because of Parkinson’s complications, but he is seeking to make the best of a challenging situation by devoting his full attention to leading the charge in the fight for a cure.

Senator Isakson, a long-time supporter of the Foundation and instrumental in the success of its 2017 Power Over Parkinson’s Atlanta Gala, joined the Parkinson’s Foundation Board of Directors in 2020. Of his Board appointment, the Senator said, “Having the opportunity to work on neurocognitive research as a U.S. Senator and advocate for Parkinson’s disease was a humbling task. Now, with the opportunity to serve on the Parkinson’s Foundation Board of Directors, it is my hope and sincere desire to share my experience and raise awareness.”

Also in 2020, Senator Isakson established The Isakson Initiative, an organization dedicated to raising awareness and funding for research related to neurocognitive diseases including Parkinson’s, Alzheimer’s and related dementia. Most recently, he helped to create The Isakson Chair and GRA Eminent Scholar position at the University of Georgia (UGA), which raised $4.5 million to attract a leading authority to UGA to focus on Parkinson’s research.

“Upon my retirement, I have rededicated my life to serving the people of Georgia and the United States by doing everything within my power to help those who are working toward a cure for Parkinson’s and other related neurocognitive issues,” said Senator Isakson. “If our great nation continues to invest in public/private partnerships around biomedical research, we can improve and save the lives of millions of people. Through relentless determination, I am confident in our ability to find a cure.”

After more than three decades in the real estate business, Senator Isakson became the only elected official in Georgia to serve in the Georgia House, the Georgia Senate, the U.S. House and the U.S. Senate.  He was the only U.S. Senator to serve as chairman of two Senate committees simultaneously — Veterans Affairs and Ethics. He additionally served on the HELP (Health, Education, Pension, and Labor) and Foreign Relations committees. Throughout his expansive career, Senator Isakson was praised for working across political party lines to educate his colleagues about Parkinson’s disease.

As Chairman of the U.S. Senate Committee on Veterans’ Affairs, Senator Isakson focused on ensuring that all veterans, including those living with Parkinson's, have access to quality care and the support that they need.  He also served as the co-chair of the Congressional Caucus on Parkinson’s Disease. Senator Isakson strongly supported increased research funding at the National Institutes of Health and supported funding Parkinson’s research at the Department of Defense.

Notably, Senator Isakson supported the National Neurological Conditions Surveillance System at the Centers for Disease Control and Prevention, which has focused initially on estimating the prevalence and mortality of Parkinson’s and multiple sclerosis (MS).

“Senator Isakson is a passionate, relentless advocate for the entire PD community,” said John L. Lehr, President and Chief Executive Officer of the Parkinson’s Foundation. “The Foundation is extremely grateful to have his voice, his expertise and his dedication as a Board member and early supporter of the Reach Further campaign. With the enthusiasm of supporters like Senator Isakson, we will drive research toward new, superior therapies for people with Parkinson’s.”

Through the generous support of leaders like Senator Isakson, the Parkinson’s Foundation will Reach Further to fund scientists at top institutions throughout the world who are working on research designed to advance the understanding and origin of Parkinson’s disease and to propel modern science forward. Funds will also be invested in the Foundation’s flagship initiative, PD GENEration: Mapping the Future of Parkinson’s disease, which aims to provide no-cost genetic testing and counseling to 15,000 people with Parkinson’s. Findings from this study will revolutionize the understanding of the underlying causes of PD.

The Parkinson’s Foundation is immensely grateful for Senator Isakson’s dedication to the Parkinson’s community and his advocacy efforts in helping make life better for people with Parkinson’s. His positive outlook on Parkinson’s and his drive to serve our nation will forever inspire us.

Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call us at 1-800-4PD-INFO (473-4636).

Advancing Research

Neuro Talk: What To Know About Parkinson’s Disease Statistics

Did you know that Parkinson’s disease (PD) cases in the U.S. are expected to surpass 1.2 million by the year 2030? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, outlines key statistics related to PD. He also shares insights from the Parkinson’s Prevalence Project, a research study conducted by the Parkinson’s Foundation to calculate the prevalence of Parkinson’s throughout North America.

Watch the latest Parkinson’s disease videos on our YouTube channel.

Advancing Research

How One Researcher Collaborates to Better Understand Parkinson’s

Meet the researcher Jean-Christophe Rochet

Early in his career, funding from the Parkinson’s Foundation set researcher Jean-Christophe Rochet, PhD, on a path to understanding the role of alpha synuclein, a key protein in the brain linked to Parkinson’s disease (PD). The death of neurons in the brain (known as neuronal loss) is a defining trait of Parkinson’s and is thought to involve oxidative stress and the clustering of alpha synuclein. 

Now Director of the Institute for Integrative Neuroscience and Professor of Medicinal Chemistry and Molecular Pharmacology at Purdue University, Dr. Rochet looks back at how this early work helped establish a path to understanding the mechanisms inherent to neuronal loss and dysfunction. These findings have been critical in the development of new therapeutic strategies.

“I can trace back to the Parkinson's Foundation how those early grants helped build a cell culture model in my lab, which became attractive to other groups. That first Parkinson’s Foundation grant allowed us to develop and optimize an important cell model of alpha synuclein neurotoxicity, that then became the basis of many of our initial publications. It was a very important project because it really set up key systems.”

- Dr. Rochet

Building on cross-institutional collaboration with colleagues across the country, Rochet’s lab has contributed to further understanding of Parkinson’s Disease over the past decade. This collaborative approach has led to breakthroughs in understanding the mechanisms of Parkinson’s and a radical transformation in screening processes for Parkinson’s-related genes, which could lead to the development of early therapeutic options.

Computer with science research

“There's no doubt that there’s been a tremendous explosion of knowledge not only around aspects of Parkinson's, but also in understanding that Parkinson's really exists as multiple disease subtypes. We have to think about personalized approaches, not just a one size fits all therapeutic strategy,” Dr. Rochet explained. “We have a lot more tools at our disposal to accomplish some of these therapeutic goals. The last few years have seen remarkable technological advances, along with a greater understanding of individual proteins, such as alpha synuclein, plus a greater understanding of all the different pathways involved. I think that gives good reason for hope.”

Recently, Dr. Rochet has seen his involvement with the Parkinson’s Foundation come full-circle when a member of his lab received a Visiting Scholar Award from the Foundation. While small in scale, this funding allows for the type of cross-institutional collaboration that has been so key to Dr. Rochet’s own career success, allowing young investigators to learn new techniques and help disseminate learning across labs. “One of my students was able to receive one of those awards, which allowed my lab at a later stage to move in a completely new direction that has really taken the field by storm.” 

This most recently funded research explores a form of alpha synuclein clusters and their behavior when injected into the brain.

“It's a very important mechanism that we really need to be thinking about, but I didn't want to move into that direction until I had an expert lab show us exactly how to work with that system,” Dr. Rochet said. “The data that we've collected led to numerous new [grant] awards. Tracing it back to the same theme as what happened early in my career, it really enabled us to move to a new direction with nothing to start with. Those key pieces of funding are really critical to get a start in new research areas.”

Science News

The Flu Factor: Is There a Link to Parkinson’s?

Parkinson's Foundation Science News blogs

It has long been suspected by scientists that the flu (influenza) might play a role in developing Parkinson’s disease (PD) later in life. The first and possibly most famous example of this connection was the 1918 Spanish flu outbreak. People born during the Spanish flu had a two- to three-fold-increased risk of later developing PD compared to those born before 1888 or after 1924 — suggesting that early-life exposure to the flu boosted PD risk.

A 2011 United Kingdom study reported an association between influenza infections and people developing PD symptoms such as tremor, but not with an increased risk of developing PD. There was also a small study in Canada in 2012 that found an association between having had severe influenza 10 years prior increased the risk of developing PD. Is there a connection?

Recently published in the journal, JAMA Neurology, “Long-term Risk of Parkinson Disease Following Influenza and Other Infections” (Cocoros et al., 2021), a large-scale, case-controlled study sought to rigorously investigate whether:

  1. Previous flu infections are associated with an increased risk of PD more than 10 years after infection
  2. Is the association between the flu and elevated PD risk specific to the flu — as opposed to being triggered by other types of inflammatory infections, such as urinary tract infections.

The study pulled data from the Danish National Patient Registry, which analyzed information from 10,271 men and women (average age 71.4) diagnosed with PD between 2000 and 2017. The data from this group was then compared to 51,355 controls (people without PD) of similar age, sex, and preexisting conditions such as cardiovascular disease, diabetes and lung cancer. The data of both groups was analyzed for cases of the flu (and other infections) between the years 1977 and 2016 and categorized by time from infection to PD diagnosis. Of note: given that diagnostic codes were the only method available to identify flu cases — rather than actual laboratory-confirmed cases — the study authors limited their focus to flu cases diagnosed during peak flu season.

Results

Compared to those who were not diagnosed with the flu: 

  • There was a 70% higher risk of PD for those who had the flu 10 or more years earlier.
  • There was a 90% higher risk of PD for those who had the flu 15 or more years earlier.
  • There was a 19% higher risk of PD for those who had a urinary tract infection 10 or more years earlier.
  • Other types of infections such as gastrointestinal infection, septicemia (blood poisoning from bacteria), male genital infections, appeared to be associated with PD within 5 years of infection, but not after 10 or more years.

What does this mean?

All common colds and flu strains cause inflammation. The symptoms we experience — from stuffy noses to coughing and body aches — are the result of inflammation in the body. Inflammation is how the immune system works to combat infections. We also know that inflammation has also been linked to neurodegeneration in the brain.

This study has demonstrated a strong association between PD and having had the flu within the previous 10 or more years. However, these findings do not necessarily mean that having the flu causes PD. This study also found a 19% higher risk of PD following urinary tract infections occurring the previous 10 or more years before a PD diagnosis. Other infections, such as gastrointestinal infection, septicemia, and male genital infections, which by nature also cause inflammation, were associated with PD within only five years after infection.

Inflammation is clearly a factor in PD – and influenza is known to trigger an extreme inflammatory response in the body. Whether influenza directly causes PD remains unclear. In light of the COVID-19 pandemic, and its known neurological consequences such as brain fog and loss of smell, continued robust research into how inflammation impacts the brain is warranted.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about infections and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.

Raise Awareness

Tackling Disparities in PD Care: A Movement Disorder Specialist’s Story

Dr. Lynda Nwabuobi

For Lynda Nwabuobi, MD, a movement disorder specialist at New York-Presbyterian/Weill Cornell Parkinson’s Disease and Movement Disorders Institute, patient care is as much an art as a science.

Dr. Nwabuobi, whose specialized training was supported through a Parkinson’s Foundation Movement Disorders Fellowship, delivers compassionate, individualized care to her patients while also engaging in clinical research. The Parkinson’s Foundation believes in increasing access to specialized care for people with Parkinson’s and continues to do so through funding clinical fellowships and grants.

“I had an excellent fellowship — the availability of the grant to the university allowed me to benefit from exceptional training,” said Dr. Nwabuobi. “I was surrounded by some of the greatest minds in Neurology, and it has helped my career because it opened my mind to a lot of possibilities.”

Dr. Nwabuobi’s patients with Parkinson’s disease (PD) benefit not just from her expertise, but also from her passion for clinical research, which heavily focuses on documenting and addressing the root causes of healthcare disparities. Getting to know and better understand the needs of her patients in the clinic also inspires new directions in her research.

“Having such a large practice, you truly get to see what people with PD and their family members are dealing with,” said Dr. Nwabuobi. “It shows you what the gaps in care are, and points to ways that we can make things better today.”

A prime example is rooted in Dr. Nwabuobi’s observation that women with PD are more likely to come to her clinic alone. “In my previous research work, I examined sex disparities in homebound PD patients,” said Dr. Nwabuobi. “We found that women with PD who are homebound are more likely to be alone and less likely to have access to a neurologist. In addition, loneliness affects morbidity and mortality. This tells me that women, especially those who are homebound, are a group of patients that I need to pay closer attention to; we have to do better for them.”

Dr. Nwabuobi’s Neurology residency

During Dr. Nwabuobi’s Neurology residency, she led a study on care disparities between the majority-white, privately insured patients seen at the main hospital clinic of New York University (NYU) vs. the racially diverse, multicultural community of patients seen at the nearby public Bellevue hospital clinic, many of whom were uninsured. Both sets of patients saw the same specialist, and in fact, public hospital patients saw their doctors at a more frequent rate than the main campus patients, yet still experienced disadvantages in care.

Differences noted included reduced access to physical therapy, certain beneficial medications, and deep brain stimulation surgery for the public hospital group. This research was highlighted in the Journal of Cross-Cultural Gerontology in the article titled, “Racial and Social Disparities in Health and Health Care Delivery Among Patients with Parkinson’s disease and Related Disorders in a Multicultural Clinic Setting.”

"I am passionate about creating access to better care to marginalized communities and bringing more diversity to the clinic. I am very much affected when I see that people get different treatment based on the color of their skin, whether or not they are insured, or what language they speak. People are becoming more aware of the effects of racism in healthcare. My greatest hope is that we will live in a world that provides equitable care for everyone."

- Dr. Nwabuobi

At her Columbia University clinic during her fellowship, where over 80% of her patients were white (despite the racially and ethnically diverse community surrounding the hospital’s campus), Dr. Nwabuobi decided to take action to encourage marginalized people to seek the hospital’s neurological resources.

 Lynda Nwabuobi, MD

“I had an idea to set up a table at the community farmer’s market in Washington Heights as a way of creating awareness about PD and available resources,” said Dr. Nwabuobi. “I call it “Neurology at the Market!” I found that farmer’s markets are a good way to get into communities. This year, I expanded the effort, and I had my residents and medical students involved. It has been very successful!”

“Dr. Nwabuobi’s work embodies the Foundation’s belief that all people deserve quality care, and that may require us to think outside the box,” said Juanita Pharr, Director of Clinical Affairs at the Parkinson’s Foundation. “The benefits of Dr. Nwabuobi’s approach to clinical engagement for her patients and the wider community she shares, truly highlights why the Foundation is dedicated to supporting specialized training.”

Dr. Nwabuobi reflected on the Foundation’s resources and impact on her patients: “All the programs that Parkinson’s Foundation offers are helpful to my patients — especially virtual programs. Our biggest goal in the field is raising awareness. The current work of the Parkinson’s Foundation will create greater awareness.“

Find a movement disorders specialist in your area at Parkinson.org/InYourArea or call the Parkinson's Foundation Helpline at 1.800.4PD.INFO (1-800-473-4636).

Advancing Research

Meet the Researcher Dedicated to Dopamine

Meet the Researcher Margaret Rice

The way dopamine is released and how it influences other cells (called neurotransmission) is a critical factor in understanding how Parkinson’s disease (PD) affects the brain. The influence of dopamine is also critical for motor and reward, or reinforced, learning.

New York University’s Margaret Rice, PhD, has worked to understand dopamine neurons and their role in movement for decades, bringing new insights and understanding to Parkinson’s as well as a host of other neurological conditions and movement disorders.

The Parkinson’s Foundation caught up with Dr. Rice to discuss her research at the Rice Lab at New York University. She described the impact of the Parkinson’s Foundation early grant supporting her research and her hopes for encouraging a new generation of scientists to focus on Parkinson’s. 

You received Parkinson’s Foundation research funding in 2002. How did it impact your work?

I was really interested in dopamine because it’s such a fascinating molecule. My research seeks to understand why dopamine neurons, the ones in the substantia nigra [the area of the brain that produces dopamine], are selectively vulnerable — it's a fascinating question, but also really important.

Can you describe the role of dopamine in understanding Parkinson’s?

Dopamine “wears” two main hats:

  1. As a conductor, orchestrating in movement — acting through substantia nigra dopamine neurons in the midbrain, which degenerate in Parkinson's
  2. As a motivational speaker, promoting motivation and reward — acting through nearby ventral tegmental area dopamine neurons

It makes sense that there are loops between these cell groups and that they're right next to each other, because movement and motivation are inextricably linked and dopamine neurons facilitate both processes.

I became particularly interested in somatodendritic dopamine release, which is an unusual way for neurons to communicate with each other. Typically, neurons extend long connections to release dopamine in a location called a synapse. However, the dopamine neurons in the midbrain not only make traditional connections but they also release dopamine directly from the cell body to influence their own activity, and possibly that of their immediate neighbors. My grant proposal was focused on studying that release process using carbon fiber microelectrodes (conductors) to detect dopamine release in brain slices.

The Foundation’s funding allowed me to pivot my research. I was able to use preliminary data from this work to get a National Institutes of Health (NIH) grant and I have had continuous funding since then to study dopamine. Our most recent work is addressing fundamental questions about this dopamine release. This work was published in 2021, so the trajectory has been onward and upward since that funding from the Foundation, which came at a crucial moment.

You have been dedicated to Parkinson’s research for 20 years. How has the impact of your work helped the PD community better understand this disease?

If you don't understand how something works, you're not going to be able to fix it. So, you have a cell phone and suddenly it doesn't turn on. Why? If you don't understand that you need to be charging it regularly, that it has a battery, it's useless for you.

A lot of our work is basic science. Understanding how this process of dopamine released by dopamine neurons happens is important. There is a dopamine toxicity theory of Parkinson's disease, for example, that theorizes that dopamine can oxidize [a chemical reaction], which can be toxic to cells and may contribute to the selective degeneration of dopamine neurons. Understanding factors that regulate dopamine release and uptake inside cells and understanding which aspect of this process might go awry and contribute to a degenerative process — all of this is critical in understanding Parkinson’s.

You are part of the Parkinson’s Foundation Scientific Advisory Board. Can you tell us about this work and your interest in helping the next generation of Parkinson’s researchers? 

I continue to believe that this should be one of our most important missions — to help new investigators get seed money for bigger funding, but also to engage them in the Parkinson's field. We get fantastic proposals, and it would be great if those folks became interested in turning their attention to either fundamental neuroscience about dopamine, the basal ganglia function (brain structures responsible for motor learning) or disease processes. They are all important in moving the field forward.

What makes you most hopeful that we will reach an understanding of the disease that impacts people with Parkinson's?

The more we understand how circuits and cells of the basal ganglia function normally, the greater the chance of restoring that function. If we can understand how the components of this motor system work together, we could fill in a piece that may be broken even if we haven't fixed the cause.

Learn more about Parkinson’s Foundation research initiatives at Parkinson.org/Research.

Science News

The Unmet Needs of Women with Parkinson’s

Parkinson's Foundation Science News blogs

Forty percent of the people living with Parkinson’s disease (PD) worldwide are women. Right now, in the U.S. there are more than 400,000 women living with PD. To this day, women are woefully underrepresented in PD research.

With the limited research we do have, compared to men with Parkinson’s, women with PD experience:

  1. Different motor and non-motor symptoms
  2. Different disease risk factors
  3. Different treatment side effects
  4. More challenges with access to healthcare delivery
  5. Less social support

The inherent biological, psychosocial (the influences of social factors on an individual’s behavior and mental health), sex and gender differences are seldom considered when research and care priorities are being selected.

400,000 women live with Parkinson’s

in the U.S.

Six women researchers, of whom five are doctors of medicine and three are living with PD, recently published a review article in the journal, Movement Disorders, titled, “Unmet Needs of Women Living with Parkinson's Disease: Gaps and Controversies” (Subramanian et al., 2022). They sought to rigorously evaluate and document the current knowledge, gaps and possible strategies to address the unmet needs of women living with PD, with a focus on the clinical and psychosocial aspects.

Summary

Below we summarize the authors findings, highlighting the distinctive experiences of women with Parkinson’s. The authors note that many research findings have not been conclusive yet. In addition, the researchers emphasized the need for additional studies focused on better understanding PD in women. Findings include:

Sex, Gender & Risk Factor Studies

  • PD risk is lower in current male smokers, compared to current female smokers.
  • Alcohol consumption had more pronounced risk-lowering effect in women than men.
  • Very little is known about the experience of women with PD in the Lesbian, Gay, Bisexual, Transgender, Queer or Questioning plus other sexual identities (LGBTQ+) community.
    • Discrimination and stigma as barriers to accessing care may hinder knowledge, diagnosis and involvement with multidisciplinary approaches to treatment.
    • 33% of older members of the LGBTQ+ community reported experiencing stigma from their doctor, which led to general mistrust of the medical system.
Pregnant women holding her belly

Premenstrual, Pregnancy and Premenopausal

  • Women often report worsening of motor symptoms, just prior to getting their menstrual period each month.
  • Approximately 5% of women are diagnosed with PD before they turn 40, thus how PD impacts pregnancy warrants further study.
  • PD symptoms have been reported to worsen during pregnancy and postpartum.
  • Women often report premenopausal worsening of PD symptoms, also possibly due to a decrease in estrogen.

Sex Hormones Studies

  • Estrogen may be neuroprotective, possibly accounting for later PD onset in women.
  • Longer duration of hormone replacement therapy in women with natural menopause was associated with reduced risk of PD.
  • Whether hormone replacement therapy is beneficial in treating fluctuations in PD symptoms during peri-menopause and post-menopause remains unclear.

Care

  • The public (and physicians) believe PD is a disease primarily of elderly white men.
  • Women experience a delay in getting an accurate diagnosis of PD and getting a referral to a movement disorder specialist.
  • Women often downplay symptoms, and/or may not realize the symptoms are PD-related.
  • Women are less likely to get advanced treatments, such as deep brain stimulation (DBS), despite the potential for quality-of-life improvements in mobility.

Mental Health Issues

  • Despite decreased abilities, women with PD often continue performing their usual activities, including working and caretaking for family and home. Men with PD do not.
  • Women who perceive themselves as caregivers are more likely to be in poor health, have difficulty in accessing needed medical care, and experience greater degrees of depression.
  • Women with PD have significantly less social support, more psychological distress, and worse self-reported (but not physician-reported) disability and health-related quality-of-life at initial PD care visits, compared to men.

Relationship Issues

  • Married women with PD, with disability, receive fewer hours of informal caregiving compared to married men with the same level of limitations.
  • Women living with an illness are more likely to need non-spousal help to fill in the gaps in their needs.
  • Women with PD are more likely to live in a nursing home compared to men with PD.
Two women hiking together

Top 12 Unmet Needs of Women with Parkinson’s

Below are some of the unmet needs of women with Parkinson’s the authors highlight:

  1. Customizing treatment for women’s body weight and unique drug metabolism
  2. Developing a tool to communicate with providers and improve symptom tracking (including the tracking of menstrual cycles, pregnancy, peri-and post-menopause)
  3. Improving access to subspecialty care and advanced therapies (i.e., DBS) for women with PD Guiding self-care/stress reduction strategies for women with PD
  4. Guiding self-care/stress reduction strategies for women with PD
  5. Creating culturally sensitive resources for communities, including LGBTQ+ and women of color, with PD — guide planning for the future, especially for single women
  6. Educating male caregivers with carefully chosen and organized resources and support
  7. Increasing awareness in the community to improve the recognition of PD in women and the intersection of other representative populations
  8. Educating health care professionals on the importance of referral to a movement disorders specialist for women
  9. Increasing awareness of hormonal stages in the lives of women with PD
  10. Understanding why women are not engaging in research and develop strategies to improve engagement
  11. Recruiting more women in clinical drug trials to improve counseling on the effects and side effects of treatments
  12. Conducting research on reproductive factors (e.g., natural vs. surgical menopause) on PD risk in women and the protective effects of estrogen and effects of timing of exposure

What does this mean?

In 1993, it became federal law that the National Institutes of Health (NIH) — the world’s largest funder of biomedical research — had to include women as well as men in clinical studies. However, even when women have been included, the influence of sex or gender is neither widely analyzed nor reported. PD is no exception.

PD is erroneously represented as a disease of white, older men. However, Parkinson’s cannot be fully understood without increased representation of women and underserved populations in PD research. Without being represented in PD research women will continue to experience disparities in treatment and care.

Women experience a delayed diagnosis of PD compared to men. In short, best practices need to be established for all healthcare professionals who provide care to women with PD. Healthcare professionals (including all training) should work to include the unique symptoms of women and the impact of estrogen level changes during menstruation, pregnancy and menopause and how that may affect medications.

It is essential that empowering patient educational tools be created. For example, the authors propose a symptom diary that includes hormonal cycle tracking and a PD symptom reporting guide to help women communicate their personal motor and non-motor symptoms with their healthcare professionals.

Lastly, to help address unmet research and care needs of women with Parkinson’s, the Foundation created the first national agenda specific to women with PD. This agenda identified research and care practices that better capture the needs of women. We need to continue to diversify Parkinson’s research that will ultimately help further treatments for everyone living with this disease.

Learn More

The Parkinson’s Foundation believes in empowering the Parkinson’s community through education. Learn more about women and PD by visiting the below Parkinson’s Foundation resources, or by calling our free Helpline at 1-800-4PD-INFO (473-4636) for answers to your Parkinson’s questions.

Raise Awareness

3 Ways You Can Help Us Change the #FutureOfPD

future of pd pam logo

April is Parkinson’s Awareness Month — a time to shine a light on Parkinson’s disease (PD) and share resources with the PD community. Whether that means navigating your own future with Parkinson’s or helping us create a world without PD, together we can make an impact on the #FutureOfPD.

The Parkinson’s Foundation is working toward a future where no one lives with Parkinson’s, and we want you to be a part of it. Here are three meaningful ways you can help change the #FutureOfPD:

1. Future of PD Research

Research leads to breakthroughs in treatment that bring hope. Participating in research can help us provide improved care for all people with Parkinson’s today.

Genetic testing can be a powerful tool to uncover biological pathways that cause Parkinson’s. If you have a confirmed Parkinson’s diagnosis, you are eligible to participate in PD GENEration: Mapping the Future of Parkinson’s Disease. This research initiative offers genetic testing for clinically relevant Parkinson's-related genes and genetic counseling at no cost for people with PD.

Enroll today to help accelerate scientific research and improve our understanding of PD and potentially identify better treatment options for you and future generations.

2. Future of PD Care

Receiving specialized care makes a difference. Our Global Care Network guides the future of care by creating opportunities for people with PD to access high-quality care.

Comprehensive care is varied and not easily accessible for everyone living with Parkinson’s. The future of PD care involves closing the gap between those diagnosed with Parkinson’s and those receiving comprehensive care, information and support. Help us ensure that all people with PD have access to equitable and quality care — getting what they need, where and when they need it.

Make sure you or your loved one has an expert care team to live better with Parkinson’s today. Visit Parkinson.org/InYourArea.

How are you planning to define your Parkinson’s future?

"For my PD future it's all about sustainability for my physical health. I'm going to keep working out and taking time for myself. Self-care is really important."

- Tyaisha Blount-Dillon

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3. Navigate Your PD Future

Whether you are newly diagnosed or have been living with Parkinson's for a while, we are here to help you navigate your PD future.

The Parkinson's Foundation Helpline can help answer your Parkinson’s questions:

  • Can you recommend a Parkinson’s exercise class?
  • As the primary caregiver, are there any resources that can help me?
  • Can you refer a movement disorder specialist, physical therapist or another specialist?
  • And more

Our Helpline specialists are here to help you navigate your future with PD. Reach us at 1-800-4PD-INFO (1-800-473-4636) or Helpline@Parkinson.org.

Advancing Research

Neuro Talk: How Does Basic Research Get Us Closer to a Cure?

How can understanding the basic biology of Parkinson’s disease (PD) help us prevent Parkinson’s altogether? In our latest Neuro Talk, Parkinson's Foundation Chief Scientific Officer James Beck, PhD, discusses what basic research is and how funding researchers early in their careers can lead to scientific breakthroughs. He also highlights the role that Parkinson’s Foundation initiatives like PD GENEration: Mapping the Future of Parkinson’s Disease and Reach Further play in furthering PD research.

Watch the latest Parkinson’s disease videos on our YouTube channel.

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