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.

“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 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 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

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).

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 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 diagnosis, managing 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.

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

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

In 2013, Mike Horak was diagnosed with early-onset Parkinson’s disease (PD) at age 48. The diagnosis of Parkinson’s was all too familiar – it is one he shares with 81-year-old father, who has been living with PD for 20 years, and his great-grandmother, who passed away in 1955. Given this significant connection to PD, Mike is determined to support the development of better treatments, and ultimately a cure, for Parkinson’s disease.

The Asheville, North Carolina resident and Parkinson’s Foundation Advisory Board member for the Carolinas Chapter has channeled this determination into action, recently stepping up as Reach Further campaign co-chair for the Carolinas. Reach Further is a four-year fundraising campaign with an ambitious goal of raising an additional $30 million to accelerate the Foundation’s work to advance research toward a cure and expand community care and programs.

“I don’t know if we will find a cure in my lifetime,” said Mike, “but I want to be part of the process. I think a cure is going to come. As someone with Parkinson’s disease, the Reach Further campaign matters. At the end of the day, it will increase our knowledge, our quality of life, and the kind of Parkinson’s healthcare we have in our communities.”

Mike is also participating in the Foundation’s new initiative, PD GENEration: Mapping the Future of Parkinson’s Disease. Supported by the Reach Further campaign, PD GENEration provides no-cost genetic testing to people with Parkinson’s, as well as genetic counseling to help participants understand their results.

Mike submitted his cheek-swab DNA sample by mail recently, which will be analyzed for clinically relevant Parkinson's-related genes. He is currently awaiting his results, which will be delivered via a telemedicine session with a genetic counselor. This information may provide answers about his family’s current and past link to Parkinson’s disease, potential clinical trials he may benefit from, as well as what the future may hold for his two college-aged daughters.

“I think Parkinson’s disease is well behind the eight ball in terms of what we know about genetics and genetic treatments. We are at the cusp,” Mike said. “I want to have a better idea of the source of my Parkinson’s and the source of my particular symptoms. I also wonder if I have the genes that make it more likely that my kids will get PD. If my father, who is also participating in PD GENEration, and I do get information that indicates we have a genetic component, I want to be part of the research. Knowledge is power.”

Mike, who has benefitted from cutting edge Parkinson’s treatments under the guidance of a dedicated movement disorder specialist, is also passionate about the expansion of Parkinson’s care and resources in medically underserved regions. He said, “In Western North Carolina, there are not many neurologists, and only one movement disorder specialist in the area. I’m excited that Reach Further will raise dedicated funds to expand access to quality Parkinson’s care in areas like mine.”

Managing Parkinson’s symptoms for Mike includes staying physically active; he and his wife Lisa are avid hikers.  “Activities like taking a walk every day, getting on exercise bike, yoga — they all have powerful benefits for the body and soul,” Mike said.

Shortly after Mike’s diagnosis, the couple decided to fulfill a dream and hike 435 miles along Northern Spain’s Camino de Santiago. Reflecting on this, he said, “Don’t put off till tomorrow what you can do today. No one knows what the future is — live accordingly and you are going to have a happier life.”

Mike offered the following advice to those newly diagnosed with Parkinson’s disease, “Know that you are not alone. There is a whole community that will support you. Reach out, call the Parkinson’s Foundation Helpline, call your local chapter. You will find someone who will reassure you and remind you that it is not a death sentence, it is just a diagnosis. People with Parkinson’s live rich, meaningful lives. Do things that make you happy, support causes like the Parkinson’s Foundation that help improve quality of life and most importantly, keep active!”

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

Josh Raskin’s understanding of Parkinson’s disease (PD) has evolved over the last 40 years. He knows that you can live with intrusive symptoms and get misdiagnosed. He knows that his father would have had a better quality of life had he found resources and expert care early on, and he knows that the more he increases his involvement with the Parkinson’s Foundation, the more whole he feels.

Josh’s father, William, most likely lived with Parkinson’s for 20 years before he passed away in 2005. “We think he had it for many years before he was formally diagnosed,” Josh said. “Looking back, I also think my grandfather had Parkinson’s. My uncle is living with Parkinson’s now. This is a disease that is prevalent in my world. It’s personal.”

Josh has made it a point to incorporate Tzedakah in his life (the Hebrew word for charity) by trying to make things a little better for the Parkinson’s community. “I was always looking for an outlet to express the importance of being charitable and I found lots of great causes, but not one that means as much to me as Parkinson’s disease,” Josh said.

Josh has been an important part of the Foundation board for four years. He recently found a new way to make an even greater impact, faster. Josh is now co-chair of the Parkinson’s Foundation Reach Further campaign, alongside fellow Board member Penn Egbert.

The Parkinson’s Foundation launched Reach Further to accelerate progress on Parkinson’s research and increase access to quality of life programs. This four-year fundraising campaign will raise an additional $30 million to expand its reach while advancing research toward a cure.

“This is a big deal,” Josh said. “I think this is going to increase progress on several aspects of the Foundation’s mission. I originally became involved with the Parkinson’s Foundation in search of a cure. With my father and grandfather living with Parkinson’s, you can understand why I would be nervous. I was all about research and finding the cure. Reach Further is a proactive endeavor on all fronts as my focus has evolved.”

Research is just one component on the campaign. “Reach Further will move forward the PD GENEration study and other Foundation grants that aim to find a cure. This is not a moonshot approach, this research going on right now helps us with the building blocks to understand Parkinson’s from the start. This creates outcomes and work that will be leveraged by everyone out there looking for a cure,” Josh said.

For Josh, it was not until he began serving on the Parkinson’s Foundation board that he realized his father’s Parkinson’s experience could have been superiorly different. “My orientation about this disease has changed dramatically,” Josh said. “Today I’m so much more optimistic. There are better treatments and one of the differentiating factors of the Parkinson’s Foundation is that our focus and emphasis is to improve the lives of those living with Parkinson’s now. I feel my father would have had more time, better quality of life and this huge support system in place had we found the Parkinson’s Foundation before he was diagnosed.”

The synchronization of research and care is what drew Josh to co-chair the $30 million campaign. “When we raise these funds, we are going to be able to increase the number of our Centers of Excellence and increase access to care to local communities,” Josh said. “We are going to be able to help a much bigger percentage of people with Parkinson’s. This campaign will keep us on the right path for Parkinson’s Foundation research breakthroughs.”

Josh and his wife, Melissa, work alongside Penn, the Reach Further co-chair, to co-host the Celebrate Spring New York fundraiser. The annual event has raised a total of nearly $1.5 million since 2007. “This event was a way to give back, raise awareness and get your friends involved. The more I worked alongside the Foundation, the more impressed I was. When I was asked to join the board, I was excited to make a difference in something I felt so passionate about.”

For Josh, it took many years of knowing Parkinson’s before he found a large-scale way to make lives better for people with Parkinson’s. His advice to anyone looking to get involved is simple, “Do it now, reach out to us,” Josh said. “We need all the help we can get. Everyone at the Foundation is extremely knowledgeable and will help you find a way to get involved.”

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