Advancing Research

How exactly does PD GENEration work?

Older man playing with his granddaughter

Have you wondered if your or your loved one’s Parkinson’s disease (PD) diagnosis can be linked to genetics? How can knowing if you have a genetic tie to Parkinson’s help you manage your disease?

The newest Parkinson’s Foundation initiative, PD GENEration: Mapping the Future of Parkinson’s Disease, is committed to helping people with Parkinson’s answer these questions while furthering critical Parkinson’s research. The groundbreaking initiative offers genetic testing and genetic counseling for people with Parkinson’s at no cost. How exactly does it work?

pdgeneration infographic

After a successful pilot program phase, the Parkinson’s Foundation is currently increasing nation-wide enrollment in the study. PD GENEration research participants can now take part in the study from home or in person. Participants can complete a genetic test at home through a healthcare professional-guided telemedicine appointment or complete in-person testing in cities across the U.S. To see if a PD GENEration site is near you and to schedule an appointment, enroll now. Please allow up to two hours to complete an in-person appointment.

ENROLL NOW

How can genetic testing potentially help me?

When you and your doctor know which genetic mutation you have in relation to PD, you may qualify for enrollment in more clinical trials and help improve your PD management in the future. By completing PD GENEration genetic testing, you can help accelerate scientific research to improve understanding of PD and potentially identify new and/or better treatment options.

We’re here to help. For more information, email us at Genetics@Parkinson.org or call our Helpline at 1-800-4PD-INFO (473-4636) to speak with a Helpline specialist in English or Spanish.

My PD Story

Jaret Patterson playing football
Family Members

Jaret Patterson

My name is Jaret Patterson and I play for the Washington Commanders Football Team. My journey in becoming a professional football player wasn’t an easy one. I was viewed as an undersized player with limited speed to play in the National Football League. The one person in my family who was always my biggest cheerleader is my Aunt Debbie.

Aunt Debbie was my babysitter when I was an infant, and even as I attended school. She knew that football was my passion. She always made sure I completed my homework before I went to the park to play football. She also made sure I didn’t get in trouble so my parents could continue to allow me to play football at the park. When I got back to her house, Aunt Debbie would make the best snacks. Her homemade cookies will always be my favorite.

When I finally started playing on a youth football team, she always encouraged me, despite my limited playing time. When I finally got the opportunity to run the football, she rewarded me with my favorite cookies.

In 2014, Aunt Debbie was diagnosed with Parkinson’s disease. This diagnosis turned our family upside down. As a family, we knew little about the disease. The only person I knew had Parkinson’s was Freddie Roach, a trainer for famous boxers.

Jaret Patterson with family

I remember when she first found out she had Parkinson’s she became very sad and depressed. She wasn’t my fun-loving cookie-making aunt for a while. It took a long time for Aunt Debbie to get used to the never-ending tremors, body achesmemory issues and stiffness. She also had to adjust to having someone to assist her with personal needs.

In 2017 and 2018, our family participated in the Moving Day DC, A Walk for Parkinson’s. This helped my Aunt Debbie embrace and fight this disease. I am blessed to play for our home team so I can visit her regularly.

My Aunt Debbie fights this disease everyday with no complaints. She inspires me to work harder and to be thankful for everything in my life. She is back to baking cookies again and when I got my first NFL start against the Philadelphia Eagles, she baked me my favorite cookies.

Jaret helps raise funds for Parkinson’s research as a Parkinson’s Champion.

Become a Champion and put your own unique spin on a fundraiser

My PD Story

Michael Waterstone posing in library
Family Members

Michael Waterstone

For Michael Waterstone, newly named regional co-chair of the Reach Further campaign for the Parkinson’s Foundation California Chapter, tackling Parkinson’s disease (PD) is a family affair.

Michael’s mother Judy lives with PD. In her honor, the whole family comes together annually to raise money for Parkinson’s research, care and education for the Foundation’s Moving Day Walk. “With Parkinson’s, there are lots of uncertainties and challenging aspects, so it always feels good to do something uplifting together,” said Michael.

Recruited as a member of the inaugural California Chapter Advisory Board, Michael has served since 2020 on the board development committee and also recently made an inspirational lead gift to set the Reach Further campaign off on strong footing. The campaign’s ambitious four-year goals include raising an additional $30 million to accelerate the Foundation’s work to advance research toward a cure and expand community care and programs.

“The Foundation is a good steward of resources to improve the lives of people with Parkinson’s and their families,” said Michael. “I like the idea of giving the Foundation a broader platform to make a bigger difference.”

Michael Waterstone with family

As Reach Further regional campaign co-chair, Michael will lead campaign fundraising efforts within the Parkinson’s Foundation California Chapter and will work to inspire others to support the campaign’s critical goals. For Michael and his family, the Reach Further campaign’s emphasis on expanding care to ensure that everyone with PD has the opportunity to work with a specialized medical team is particularly impactful.

Michael said, “As volunteers, what we all want is to feel we are contributing in a way that helps and makes a difference, and I am hopeful that this is an area I can do that. At the end of the day, what we are all hoping for is to make the lives of people with Parkinson’s better.”

For the Waterstone family, which includes Michael’s wife and three children, Michael’s father Stuart, sisters Debi and Rebecca, and their children, frequent family gatherings help them stay connected and face the continued uncertainties of PD.

When asked what advice he might offer to other families facing Parkinson’s disease, Michael said, “The more family and friends and loved ones you have around the better. Everyone is going to need to support each other.”

Help us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach. Find opportunities to volunteer at Parkinson.org/Volunteer or call the Helpline at 1-800-4PD-INFO (473-4636).

Science News

New Study: Can People with Parkinson’s Experience Apathy and an Impulse Control Disorder at the Same Time?

Parkinson's Foundation Science News blogs

Historically described as being on opposite ends of the spectrum, apathy affects about 40% of people with Parkinson’s disease (PD), while impulse control disorders (ICDs) affect between 14% and 40% of people with PD. How are they different?

Apathy ― which comes from the French, apathie, meaning “passionless existence” ― is the feeling of being emotionally flat, lacking enthusiasm or interest in doing anything. Apathy can express itself in different ways, often leading people who experience it to stop exercising, keeping up with friends and family or even stop taking medications. Of note, apathy is often confused with depression, but they are not the same: with depression, there’s a profound sense of feelings of guilt and worthlessness.

Impulse Control Disorders (ICDs) are the inability to stop doing something that is harmful, or could become harmful, to yourself or others to the point that they impair one’s ability to function at work, home and navigate day-to-day life. Performing the activity can lead to a feeling of elation. Examples include online gambling, compulsive shopping and hypersexuality.

Since apathy and ICDs elicit opposite feelings, is it possible for a person with PD to experience both at the same time? It seems counterintuitive, but may not be. A study recently published in the journal, Neurology, “Co-occurrence of apathy and impulse control disorders in Parkinson’s disease”(Scott et al., 2020) sought to explore whether a lack of motivation or interest can co-exist with an irresistible urge to perform activities.

Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, and the team of study co-authors utilized a convenience sample of 887 people with PD from the University of Florida Norman Fixel Institute for Neurological Diseases, a Center of Excellence, and characterized them by disease combination; they used a variety of tests to measure apathy, depression, anxiety, cognition and ICD.

Demographic data were taken, including PD onset, disease severity, as well as medication use. Medication was of particular interest because in addition to relaying messages that plan and control body movement, dopamine also plays a primary role in the reward pathway in one’s brains (the “feel-good” chemical).

Study participants included those with Parkinson’s experiencing:

  • An impulse control disorder (ICD): those with clinically significant ICD symptoms only
  • Apathy: those with clinically significant apathy symptoms only
  • Both: those with both clinically significant apathy and ICD symptoms
  • Neither: those with neither clinically significant apathy nor ICD symptoms

Results

  • 61.6% of study participants had both ICD symptoms and apathy
  • 41.3% of study participants with apathy also had ICD symptoms
  • The ICD-only group had higher daily dopamine agonist medication use than patients in the apathy group
  • There was no significant difference in dopamine agonist use between the Neither group and the apathy group
  • Anxiety and depression each positively correlated with both apathy and ICD symptoms, separately

What Does It Mean

Woman pondering

A person with PD can indeed experience both apathy and ICDs ― suggesting they are not on opposite sides of the spectrum. In fact, a significant majority (62%) of those with PD in this study with ICDs had clinically significant apathy; while 41% of people with PD experiencing apathy also had ICD symptoms. Further, having both apathy and one or more ICDs resulted in having the highest levels of anxiety and depression.

“The findings from this study challenge the longstanding dogma that apathy cannot co-exist with impulse control behaviors. Although it seems counterintuitive, clinicians should appreciate this possibility.”

- Dr. Okun

This study suggests that it is imperative that clinicians, researchers, healthcare providers and care partners consider that these two PD symptoms are not mutually exclusive ― you can experience both at the same time. Knowing that someone with PD could have apathy and ICDs simultaneously, could profoundly impact clinical study designs, how novel medications are designed and tested, the approach (and mindset) of caregivers, and perhaps how those with PD think about themselves.

Learn More

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

Tips for Daily Living

Cover, Control, Contain: Navigating the Holidays with Parkinson’s

Family enjoying Thanksgiving together

With climbing COVID-19 numbers, the Centers for Disease Control and Prevention (CDC) recommends not traveling for the holidays. If you are planning to visit members of your family this holiday season, we have information and planning tips to help get you through the rest of this year.

On November 12, Michael S. Okun, MD, Parkinson’s Foundation National Medical Director, led our Facebook Live event “Navigating Parkinson’s and COVID-19.” Dr. Okun highlighted tips for the PD community to survive and to thrive during the 2020 holiday season.

Question: What advice would you give for those living with chronic conditions like Parkinson's disease (PD) this holiday season, especially when holding family gatherings?

Dr. Okun: Follow the three C’s all holiday season, and well into 2021:

  • Cover. Always wear a two- or three-ply face mask (like a surgical mask) when you are around others or in public. Don’t wear bandanas or gaiter face coverings.
  • Control. Control your environment. If possible, attend holiday gatherings or family events outdoors. It is safer to not be in close proximity to others indoors.
  • Contain. Keep your gatherings to 10 people or less. Walk or sit six feet or more away to eat or drink. Don’t take your mask off to eat or drink around people who don’t live with you (in your house).

Should I get the flu shot?

COVID-19 or not, get the flu shot. Our hospital and other hospitals are seeing people who can get COVID-19 and the flu together, a potentially deadly combination. I advise every patient to take the flu shot.

What unique considerations should people with PD and their families keep in mind to celebrate the holidays?

First, follow the 3 Cs. Next, if you travel, try to travel by car. Getting on airplanes can add another layer of risk. If you want to be extra cautious, wait out the holidays this year. Keep in mind that research already shows that people with chronic diseases (like Parkinson’s and diabetes) have a hard time recovering from COVID-19. It is important that you treat this virus with gravity and seriousness.

Should I travel by plane?

COVID-19 numbers are high right now and air travel may not be the best idea. If you plan to travel by plane, remember that planes have closed environments. Keep your mask on, consider wearing two masks (or a N95 mask), try to keep a distance from others and wear protective eye wear (not just glasses).

Does cold weather make Parkinson’s symptoms worse?

Stress, anxiety, sleep deprivation and cold weather can all make PD symptoms worse. Stay warm. Keep in mind that when you are bundled up and wearing your mask, sometimes you can’t see your feet, which can make people with balance issues prone to falling. Curbs, uneven or icy surfaces can be particularly tricky for people with Parkinson’s, so when outdoors hold on to your loved one to stabilize yourself.

I have Type I diabetes and Parkinson’s. Anything I should keep in mind for the holidays?

Having both makes it more difficult to recover from COVID-19. If you have either one, and especially both, be extra careful when thinking of attending holiday gatherings. Consider wearing a double mask (or N95) and follow the three C’s. The CDC has asked that the public not buy up all the N95 masks unless someone is at a high risk.  If you buy a N95 mask you should contact your local hospital to do a fitting and see if it is appropriate for the contours of your face.

Can I catch COVID-19 through a holiday meal?

You can safely eat food that others have cooked. If you eat takeout food, we are not seeing a lot of hard evidence that food packages can transmit the virus to you. Nonetheless, to be safe, before serving food, place it on another plate or in another bowl and wash your hands.

What should I do if I have an immune deficiency syndrome and also have Parkinson’s?

Talk to your doctors, but in this scenario, you may want to take the extra precaution of staying home this holiday season. Your doctor can outline a risk benefit ratio for you.

Do you have any tips for managing depression, demoralization and loneliness during the holidays?

People with Parkinson’s are already apt to experience higher levels of stress, anxietydepression and demoralization. The holidays can exacerbate any of these Parkinson’s related symptoms. Additionally, more than half of caregivers experience caregiver strain. These are all issues we need to do a better job addressing. Here are some tips:

  • Talk to your doctor. You may have medication options available that can help. 
  • Stay engaged. The Parkinson’s Foundation PD Health @ Home program has a steady stream of new weekly events you can attend online.
  • Try new things. There are a lot of guided meditation and stress management programs out there. There is even guided meditation through a virtual reality machine called an Oculus.
  • Virtually volunteer. If you do not plan on leaving the house, look for ways you can volunteer virtually through local PD programs or the Parkinson’s Foundation. Learn more at Parkinson.org/Volunteer.

Are you excited about the COVID-19 vaccine?

If one of the vaccines reported in the news is 90-95% effective, then it will be more effective than we hoped. We need the data and we need more details before making a judgement. There will be a few types of vaccines and we are excited to see the data, which will soon be publicly available. The top scientists in the world will be looking at this data. We want to observe how certain age groups and people with chronic illnesses do after receiving the vaccine. The real takeaway is, if your doctor or a medical expert is taking the vaccine, then you should probably follow. With or without a vaccine, the most important thing you can do is wear a mask.

Remember that wearing a mask throughout the entire holiday season and beyond will be necessary to get us out of this pandemic as fast as possible (with or without a vaccine). Research has already shown us that if everyone wears a mask, we can protect one another and minimize the spread (e.g. examples from other countries). Stay safe and healthy this holiday season.

For Parkinson’s information, references to online programs and local resources, along with support, please contact the Parkinson’s Foundation Helpline at 1-800-4PD-INFO (473-4636).

My PD Story

Jamie and Wendy Harrison after running a marathon
Family Members

Jamie and Wendy Harrison

Brother and-sister duo Jamie and Wendy Harrison refuse to allow Parkinson’s disease (PD) to define their family or their future. Instead, they have chosen to employ hope and action in the fight to end PD.

The siblings ran the 2021 TCS NYC Marathon as Parkinson's Champions to raise awareness about Parkinson’s and highlight the journeys of their family members with PD. Together, they raised $70,000 for the Parkinson’s Foundation on marathon day.

Jamie Harrison running marathon

“Every step taken, and every dollar raised ensures we are that much closer to finding a cure for Parkinson’s,” said Wendy.

Jamie and Wendy’s dedication to eradicating PD stems from significant connection to the cause: two generations of their family have been impacted by Parkinson’s. Their mom, Judy Harrison, lives with PD. Late grandfather, Dr. Charlie "Chick" Harrison, whose impressive medical career included serving as team physician for the Atlanta Falcons, lived with Parkinson’s and passed away just a few months after the marathon. Judy’s late parents, Jim and Janet Pangburn, also bravely battled PD.

However, the roots of advocacy and philanthropy run equally deep in their family. The entire Harrison family has rallied to support the Foundation’s mission of making life better for people with Parkinson’s. Ponder Harrison (Jamie and Wendy’s father) has served as a member of the Parkinson’s Foundation Board of Directors since 2019.

The marathon represented a significant accomplishment for Jamie and Wendy: it was their first marathon.

“When I informed my mom and grandad that I planned on running the NYC Marathon in honor of them and to raise awareness for the Parkinson's Foundation, they could not have been more humbled and appreciative,” said Jamie. “While neither of them were marathon runners, they fully understood and appreciated just how much time, preparation, and sacrifice goes into successfully completing such a race. They were proud that we would take on such a massive and daunting challenge not only in honor of them, but in an effort to beat and end a disease that affects so many people.”

Wendy Harrison running marathon

Wendy recounted her favorite marathon moment: “Seeing my mom at mile 17 was such a special moment. I even ran to the fence to give her kiss on the cheek. She’s my best friend, the strongest person I have ever known, and has always been my biggest cheerleader.”

Jamie and Wendy previously joined forces with their father to plan the Power Over Parkinson's Atlanta Gala. The gala, which honored Dr. Harrison and Judy Harrison, raised $1.4 million for the Parkinson's Foundation.

In turn, with funds raised from the gala, the Parkinson’s Foundation provided a grant to the Piedmont Atlanta Neurosciences Fund in honor of Dr. Harrison and Judy. Of this grant, Ponder Harrison said "My family is thrilled to have partnered with the Parkinson’s Foundation to provide this grant to Piedmont Hospital and further support people with Parkinson's in Georgia. Knowing that this gift will advance an institution where my father spent his career helping others means so much."

Jamie and Wendy Harrison with family after marathon

Jamie and Wendy feel strongly about investing in research toward a cure. “Growing up as a child and witnessing grandparents battle PD, I can tell you firsthand that the advancements made in medicine to combat this disease have been nothing short of extraordinary and monumental,” said Jamie. “Some of the brightest minds on earth are working around the clock to continue this progress and ultimately find a cure, which is why running as a Parkinson's Champion and continuing to raise awareness is so very important.”

Jamie offered the following advice to the children and grandchildren who are helping their loved ones navigate PD: “In the famous words of my mom — ‘Parkinson's is not what's going to define me, I am going to define it by how I live with, battle, and beat it’ — do not dwell on symptoms and allow yourself to be instilled with a sense of fear around PD. Rather, celebrate all the memories you can make, things you can do, and time you can spend with loved ones despite them having PD. Further, know just how close we are to finding a cure.”

Join our Parkinson’s Champions team

My PD Story

volunteers blog charles harris
Health Professionals

Charles Harris

As a professional health liaison, Charles Harris has dedicated his career to helping people navigate complex health challenges like Parkinson’s disease (PD). He has recently channeled his devotion to patient-and-family-centered care into his new roles as Advisory Board member for the Parkinson’s Foundation and Mid-Atlantic campaign chair for the Reach Further campaign.

Throughout his career, Charles has worked closely with people diagnosed with Parkinson’s and their family members. He is often the first person to talk with patients and families about care needs and helps connect them with support resources.

“I have encouraged people with Parkinson’s to reach out to the Parkinson’s Foundation for support, for information, education, and simply to know that they are not alone,” said Charles. “I also encourage care partners to make proactive steps, educate themselves and obtain as much support as they can.”

Driven by his passion to help those facing Parkinson’s, Charles will work to inspire his community to support Reach Further’s ambitious goals: raising an additional $30 million over four years to accelerate Parkinson’s research and increase access to healthcare and quality-of-life programs.

“My background educationally is in psychology, so I’ve always been a people person, and have wanted to help people feel empowered to make decisions that are best for them and for their loved ones when it comes to health care and support,” said Charles. “I am so glad to have the opportunity to bring this experience to my role with the Parkinson’s Foundation and Reach Further.”

Charles, a resident of Washington, D.C., is also passionate about healthcare access, especially in underserved regions and communities. In his city, he describes having a “wealth of healthcare access.”

Charles said, “I come from a family that educated me on the importance of good health care. Not everyone has that privilege. Just 40 to 60 miles from D.C., like across the border in the Appalachian regions of West Virginia, you are in a health care desert.”

Reach Further aims to address disparities in attaining top-quality neurocognitive care and support for people with Parkinson’s. At present, the delivery of comprehensive Parkinson’s resources in the United States is not easily accessible outside of the Parkinson’s Foundation Global Care Network. The campaign aspires to provide better, more attainable care to the one million Americans living with Parkinson’s. It will expand the Global Care Network by 25 percent to areas where little or no comprehensive care currently exists, with a particular emphasis on underserved and hard-to-reach areas.

“PD is not an easy diagnosis to hear or to maneuver, but it is maneuverable,” said Charles. “I want people with PD and their loved ones to know that the Parkinson’s Foundation is here for everyone on this journey.”

Help Us Reach Further. Donate and check our campaign progress at Parkinson.org/Reach or call the Helpline at 1-800-4PD-INFO (73-4636).

My PD Story

Dick Field and family holding PF banner
People with PD

Dick Field

Every year Dick Field invites his family on an adventure. “We try to take all our grandchildren to interesting places,” Dick said. Their adventures took on a new meaning — and some modifications — when Dick was diagnosed with Parkinson’s disease (PD).

After going to Africa, the family set their sights on Iceland in 2017, where icy terrain proved to be challenging. “It was a difficult trip and I could not complete the journey,” Dick said. So, in 2018, Dick better prepared himself physically and invited the family to join him in southern Spain, for a hike — with a purpose.

Full of history and culture, Dick challenged each of his family members to climb the Rock of Gibraltar, together "I will give the Parkinson's Foundation a thousand dollars for each of you who make it to the top," Dick told his children and six grandchildren. Everyone was motivated and ready to go.

Dick prepared by timing his medication and packing his walking stick. When traveling with six children, there was a steady supply of snacks. He also planned his path. “There are two sides of the climb, one is a sheer drop and one is a more gradual climb, like climbing the lower part of the Rockies," Dick said. "Guess what side our family selected?”

From eight years old to 78, the family of 12 began their ascent. "We arrived early so that we had the climb to ourselves," he said.

“It was a beautiful day and the Mediterranean was sparkling blue,” he said. The Field family set their own pace, stopping to meet a variety of interesting groups along the way. “The climb attracts so many types of people my grandchildren were able to meet,” he said.

It took four hours to reach the 1,388-foot elevation. “I felt elated when I got to the top,” he said. “Elated that I’m still able to do this kind of stuff.” From the top they were able to see Morocco, Spain and France. The family took it in and began their descent, making memories and taking photos along the way.

Dick’s grandchildren are no strangers to Parkinson’s, as another close family member is also living with PD. “They are all aware of Parkinson’s disease and knew it’s why we were climbing,” Dick said. “They now all have a newfound sense of different ways you can contribute to a non-profit.”

Serving as a Parkinson’s Foundation board member since 2013, Dick believes in the Foundation and has both helped and received help from the Foundation.  

“Many People who have been diagnosed don’t know what to do,” he said. “Simultaneously, many movement disorder specialists don’t have the time or inclination to take deep dives with their patients to discuss this disease. At the Foundation, we’re setting new standards to help more people, especially through our Centers of Excellence, which provide a detailed action plan for managing your disease.”

“The focus of the Foundation is cure and care. Everyone who works at or together with the Foundation is on the right track, coming together to further Parkinson’s research,” Dick said.

Dick and his family are now setting their sight on a new adventure in 2019. He won’t let his Parkinson’s slow him down.

Like the Field’s family, if you are interested in raising awareness for the Parkinson’s Foundation through a Do-It-Yourself fundraiser learn more and Parkinson.org/Champions

My PD Story

Natasha Fothergill-Misbah traveling
Researchers

Dr. Natasha Fothergill-Misbah

My journey into researching Parkinson’s disease (PD) started in 2015 when I travelled to Tanzania to understand what life was like for people living with PD with almost no access to medication or support. This project was part of my Master of Science degree in Global Health (MSc) and the experience that kick-started my passion to pursue a doctorate where I could contribute more to the limited research on PD in Africa.

My PhD took me to Kenya, a lower-middle income country on the East coast of Africa, which happened to also be the place I call ‘home.’ Growing up in Kenya opened my eyes to the difficulties so many people face in terms of poverty and poor access to affordable healthcare. Since leaving Kenya for my later school years and then University in England, I always wanted to return and make a difference.

My PhD explored the lived experiences of people with PD, and their families, in Kenya. I wanted to understand what challenges people with PD had from obtaining a diagnosismanaging their condition, through to the end of life; the complete journey of PD in Kenya. This experience involved many happy memories, but also so much sadness as I witnessed physical and emotional suffering. So many of the people with PD I met could not afford medication and spent months un-medicated, many had not even been told they had PD, nor did they know how to manage their symptoms.

While in Kenya, I came across the Parkinson’s Support Group in Nairobi, a group of 20-40 people that met once a month in a church classroom. The group was established by people who wanted to meet others with PD and provided information, education, social support and resources to anyone who needed them.

I became involved with meetings, joined their WhatsApp group and even replicated the work they were doing in my hometown, Mombasa. Kenya now has two active support groups. I also became very involved with Africa Parkinson’s Disease Foundation, a Non-governmental organization (NGO) based in Kenya established by Hellen Mwithiga, which supports people with PD, their families and caregivers.

Hellen offered me the opportunity to attend the Leadership Forum of the World Parkinson’s Congress in Kyoto in 2019 to talk about the situation of PD in Africa. This is where I had the opportunity to meet so many wonderful people and organizations working to help people with PD, including the Parkinson’s Foundation. The team was kind enough to donate a bag of wristbands for the groups in Kenya. The Parkinson’s Foundation has been very supportive and allowed me to use their resources to develop educational material in Kiswahili, Kenya’s main language. I have continued to work with the World Parkinson’s Coalition’s working groups, specifically to build global relations with PD and make information resources available to people with PD globally.

I have had the opportunity to travel to several international PD conferences to present my research. Yet, at every conference I note the scarcity of research from Africa, or much of the ‘developing world.’ This is something I want to help change. In 2019, I was invited by the Movement Disorders Society to teach on a training course for physicians and allied health professionals in Tanzania. I have also been invited by the World Health Organization to attend and contribute to a PD consultation workshop to address global policy, implementation considerations and the research agenda for PD. I am constantly looking to build networks and connections with researchers globally to think of new ways and ideas to help people with PD in Africa.

Natasha in Africa with group of people

I have tried to be as involved as I can with the Parkinson’s patient community too. I have joined the PD Avengers and I am involved with two working groups, one aimed at improving patient involvement in research, and another looking at wellbeing and global equity.

More recently, I have been involved with the non-profit organization Parkinson’s Africa, founded by Omotola Thomas to connect Africans impacted by PD to the information, education, support and resources they need. Importantly, Parkinson’s Africa wants to overcome the stigma often associated with PD and change public perception towards people with PD.

Although I am not directly affected by PD, my research experience and my interactions with people with PD from all over the world have made me want to help in any way I can. The PD community is wonderful and my advice to anyone newly diagnosed would be to get involved and learn as much as you can. There are so many inspirational people out there.

Join PD Conversations to connect with others living with Parkinson’s from around the world

My PD Story

Hannah Wolf with group of doctors
Family Members

Hanah Wolf

Hanah and her grandmother, Pamela, live in Williamsport, IN. Hanah is 17 and will be starting her Senior year of high school, and she recently donated $2,111 to the Indiana University School of Medicine, a Parkinson’s Foundation Center of Excellence as a thank you for how they have changed her grandmother’s life since her Parkinson’s disease (PD) diagnosis.

“I’ve always wanted to do something for my grandma because she always supports me,” Hanah said. “Originally, I was going to do something small, but the more research I did, the more excited I got. I realized how much Parkinson’s research still needs to be done.”

Hanah launched a fundraising campaign with the support of her school. She raised money through hosting 50/50 raffles at basketball and football games. “Some people even donated their raffle winnings back to the PD fundraiser,” Hanah said.

She also hosted pocket change collections at school and at school events. At her local elementary school she hosted a “Penny War.” Each grade was given two buckets: one for pennies and one for anything larger. Pennies counted as positive and anything larger counted as negative. So, when you add pennies to your grade’s bucket it is a positive. When another grade looks like they are gaining a lead, you add larger coins/dollars to make them go negative.

She also was interviewed several times by George Hardibeck, a local radio show host for the rival high school’s games. He donated $100 to her fundraiser every interview.

While she was managing her intricate fundraiser, she also collected 300 shoes to donate to a domestic violence shelter, and collected 2,692 medicine bottles to donate them to Mathew 25 Ministries, an organization that sends pill bottles to other countries who do not have the resources to make pill bottles and reuses them.

When asked what prompted her interest in raising money for Parkinson’s disease, she said, “Personally, the disease really changed my grandma before she underwent deep brain stimulation (DBS) surgery. She couldn’t drive or come watch me cheer ― she was a different person. After the surgery, she was able to be herself again. I wanted to do something to honor her and make her happy.”

When asked why Indiana University School of Medicine, where her grandmother receives PD treatment, she said, “I want the money to go to research. I like knowing it is going to a place that has helped my grandmother so much on a personal basis.”

Hanah hopes to attend Indiana University and study chemistry.

Fundraise on your own terms.
Begin a fundraising campaign at Parkinson.org/Champions

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