The Parkinson's Foundation Hospital Care Partner Workshop
9:30 am to 12:00 pm CDT
FREE
Early Check-in and resource tables open at 9 a.m. CST.
Presentation and speakers begin at 10 a.m CST.
The Parkinson's Foundation Tennessee & Kentucky Chapter and the Murfreesboro TN Support Group is pleased to host the Parkinson's Foundation Hospital Care Partner Workshop. The workshop will take People with Parkinson's, Care Partners, Support Group leaders and the community through the step-by-step process on how to use the new Parkinson's Foundation Hospital Safety Guide.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends, and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
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In-person check-in starts at 12:30 p.m.
Emotional and social health is an important part of living well with Parkinson’s disease (PD). Many symptoms of Parkinson’s can affect emotional and social wellness. Learn how various clinical and creative therapies can support not only symptom management but the overall well-being of the person living with PD.
Speakers
Jaimie Barr
UM Udall Center of Excellence for Parkinson's Disease Research
Roger Albin, MD
Director
UM Udall Center of Excellence for Parkinson's Disease Research
University of Michigan Health, a Parkinson's Foundation Center of Excellence
Taylor Schmitt, PhD
University of Michigan Health, a Parkinson's Foundation Center of Excellence
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
The Parkinson’s Foundation Great Lakes Chapter is pleased to be working with Michigan Medicine for the March 15th and June 21st programs in Ann Arbor, Michigan.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
Parkinson’s Revolution will take place across the country on February 24, 2024. Join us in-person at your studio location or virtually for a high energy ride that generates funds and awareness for Parkinson’s disease (PD).
Come ride for a reason and then celebrate the power of movement at our post-ride happy hour the Sweat Social! Friends, family, and members of the PD community are welcome to enjoy a short program and light refreshments immediately following the ride.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
A good night’s sleep is critical to our health and well-being. For people with Parkinson’s, sleep is more important as the brain and body need more time to restore. Learn about the common sleep issues associated with Parkinson's disease, how it affects sleep quality, and explore ways to get a better night's sleep while living with PD.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
Parkinson's Journey in Color: Advancing Research and Care
10:00 am to 1:00 pm EST
FREE
Parkinson's Journey in Color: Advancing Research and Care in Your Community
Join us for a community day where you can:
– Get resources to help you navigate every stage of Parkinson's disease
– Learn about Parkinson's research and our genetics study, PD GENEration: Mapping the Future of Parkinson's Disease
– Meet Parkinson's Foundation Research Advocates and hear their Parkinson's journey
Enjoy a complimentary lunch and a facilitated movement break!
This event is free to attend, open to all in the community, and centered on the experiences of Black and African American people affected by Parkinson's disease.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
Research Training Tailored to Black and African American Parkinson’s Community Aims to Advance Health Equity
As researchers advance treatments for Parkinson’s disease (PD), there is a critical need to engage with the Parkinson’s community early and often during the research process. Populations of focus — including Black and African Americans,hispanics/latinos, women and others — are often underrepresented in, and historically excluded from, research. Engaging these communities in the development of drugs and the design of clinical trials creates an opportunity for greater representation in research. The Parkinson’s Foundation is committed to making research inclusive and creating a systemic change in the PD research space.
In September 2023, the Parkinson’s Foundation hosted a new, tailored version of its Learning Institute, which trains people with Parkinson’s and care partners in research and advocacy to work alongside scientists and government agencies in the drug development process.
Held in Atlanta, GA, in collaboration with Morehouse School of Medicine, the new training sought to engage the Black and African American Parkinson’s community (people with Parkinson’s, care partners, neurologists and professionals). During a three-day training, participants found community, learned how to confidently work alongside researchers and use their voice to advocate for changes in research.
“As a Foundation, we are actively creating programs and developing partnerships that will advance health equity for populations of focus,” said Evelyn Stevens, senior director of community engagement at the Parkinson’s Foundation. “We designed this educational and interactive training to deepen our understanding of the current needs of Black and African American people living with Parkinson's, and their care partners.”
The training included exclusive insight into the Foundation’s global genetics initiative, PD GENEration: Mapping the Future of Parkinson’s, and the opportunity to enroll and receive on-site genetic testing as part of the study. Before the training, 29% of attendees had reported participating in a research study. By the end of the Learning Institute, 100% of participants with Parkinson's had completed their first research study, PD GENEration.
“Being part of the faculty for the Learning Institute to advance health equity in Parkinson’s care for the African American community was remarkable.”
- Reversa Joseph, MD, movement disorders specialist at Chalmers P. Wylie Veterans Outpatient Clinic
“I was honored to present on ethics in research as it was vital to empower participants with an understanding of the research process, enabling them to make informed decisions about clinical trial participation,” said Dr. Joseph.
Ensuring diversity and inclusivity in Parkinson’s research is critical to accelerating breakthroughs toward a cure, which is why PD GENEration is designed to increase racial diversity among participants. In 2023, it announced Morehouse School of Medicine as the first historically Black institution of medicine to become a PD GENEration research site (read the article).
As of January 2024, 14.9% of PD GENEration participants are racially diverse. For perspective, U.S. clinical trials generally achieve less than 2% of diversity among participants.
“PD GENEration has established a strong relationship with the community through engagement and programs,” said Amasi Kumeh, director of research partnerships at the Parkinson’s Foundation. “We have become a gateway to research, helping recruit diverse participants for clinical trials and providing information about the process.”
The Learning Institute also emphasized community. The YMCA of Metro Atlanta, The Center for Movement Challenges, and a physical therapist from Emory University hosted a movement break for attendees, as exercise is proven to help people with PD manage symptoms. On the final afternoon, community members of Atlanta were invited to learn more about PD, get resources and meet the graduates of new class of 2023 Research Advocates.
No Topic Off-Limits
Black and African Americans experience health disparities when navigating Parkinson’s from day one — and are more likely to be diagnosed later in the disease stage than white people. Knowing this, the event was designed to welcome open conversation. “We wanted to provide a safe space for everyone to share their experiences and learn from one another,” Evelyn said.
For the first time, roundtable discussions were hosted. Every table was assigned a PD expert, neurologist or Parkinson’s Foundation staff member to lead a PD topic — from symptom management to best ways to reach the Black and African American community and how to connect people to PD resources.
“The moment that I stepped into the conference room for my first day of training, I knew this would be a life-changing experience.”
- Vanessa Russell Palmer, a person with Parkinson’s and Learning Institute attendee
“Interacting with other African Americans with Parkinson's, neurologists that look like me and sharing our daily challenges was empowering," said Vanessa. Becoming a Parkinson's Foundation Research Advocate has provided me with a new village of support, and I feel empowered to fight this disease every day and to work to bring more information about Parkinson's research and access to care to the African American community.”
Discussing the ethics of research was central to the training, directly addressing medical mistrust and the historical mistreatment the community has experienced in research and care. “Understanding past mistakes is crucial to preventing their recurrence, and it was rewarding to highlight the oversight that is now in place to ensure ethical research practices. Discussing the root causes of medical mistrust is necessary for acknowledgment and progress, fostering a path towards informed and empowered healthcare decisions,” said Dr. Joseph.
Through this training and other initiatives, the Foundation aims to continue addressing the ethical barriers associated with research in its effort to help all people live better with Parkinson’s.
3 Ways You Can Help Improve Health Equity for People with PD
Participate in research studies. Help diversify research. Before enrolling, review the informed consent form with someone on your care team and let your care team know about the barriers you may have with participating in research. Learn more about Getting Involved in Research.
Help spread Parkinson’s awareness. Follow us on social media and share stories and news that interest you. The more people know about Parkinson’s, the more they know this disease goes beyond a single demographic. When people know the early signs of Parkinson’s, the sooner they can get diagnosed and have a better quality of life.
Share your story. Your story may inspire someone who has a similar experience navigating Parkinson’s disease. Submit your story now.
Diversifying Research
Diversity in research accelerates the rate that researchers can better understand PD and drives better outcomes for the entire PD community. Research advocates return to their communities, activated and inspired to raise awareness and educate their community about the importance of taking part in clinical trials. “Diversifying research gets us one step closer in our efforts to advance treatments and find a cure for Parkinson’s disease.” said Evelyn.
Next, the Parkinson’s Foundation is working to tailor more trainings and local educational events to populations of focus. As with every Foundation event, the focus remains to ensure all people with PD and their families have what they need to manage this disease and live better with Parkinson’s.
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In-person check in starts at 11 a.m.; Program starts 11:30 a.m.
Studies have demonstrated that exercise has brain and body benefits for people with Parkinson’s disease. Exercise can help to improve Parkinson’s symptoms and help individuals do the activities they enjoy. Learn that there are benefits to movement at all stages of Parkinson’s and that it is never too late to start.
Speakers
Jim Christoffel, PT, DPT, NCS
Miami Valley Hospital
Jackie Magary, PT, DPT, NCS
Kettering Health Network
Tyler McLean, PT, DPT
Kettering Health Network
This program is free and is open to individuals with Parkinson’s, their loved ones, and the community. There is no charge to attend, but registration is required as in-person seating is limited.
Join us directly after our "Fitness Counts" program for our Dayton Resource Fair! Adjacent to the educational program space from 1:30 p.m. to 2:30 p.m., we will have local Parkinson’s resources lined up to hand out free information and resources. There will also be music, food trucks, and fun for your entire support team!
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
In-person check-in and vendor visits start at 9 a.m.
APDA Minnesota Chapter, Parkinson's Foundation, and the Udall Center at the University of Minnesota are the three leading organizations for Parkinson's disease advocacy in Minnesota. We are excited to invite you to the annual Spring Parkinson's Symposium.
We will cover mood changes, cognitive changes, and research updates on Parkinson's disease. Attend in-person or online.
Note: We are currently at capacity for our in-person attendance. We hope you can register to join us virtually via Zoom.
For in-person attendees: In-person check-in and vendor visits start at 9 a.m.
For virtual attendees, via Zoom: The live stream starts at 10 a.m.
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
If you would like to be placed on the in-person waitlist please email Derek at drussell@parkinson.org.
If you would like to participate virtually, please click the orange "Register for Virtual" button above.
Living with Parkinson’s can be challenging, but there are many things you can do to maintain and improve your quality of life. This program will provide you with information to help you find the balance between a proactive approach and wondering what lies ahead.
Speakers
Sarah A Dodwell, MD
MaineHealth
Michael S Kleinman, DO
MaineHealth
Michele Delisle
Occupational Therapist, Back In Motion Physical Therapy
Aimee Reilly, LCSW
Behavioral Health Clinician III at MMP Neurology
Roople Unia, MD
MaineHealth
Anne W Herrick, ANPBC
MaineHealth
There is no charge to attend, but registration is required. This program is open to people with Parkinson's, their family, friends and the community.
Lunch will be provided for in-person registrants. In-person registration is at capacity.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
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Check-in and resource tables start at 9:00 a.m. Breakfast will be provided.
After many years of good symptom management, Parkinson’s disease may become more challenging. Learn how Parkinson’s symptoms may change over time and new strategies available for managing them.
Expert Speaker:
John Wedlake, MD
Neurologist
Stillwater Neurology
This program is open to people with Parkinson's, their family, friends, and the community. There is no charge to attend, but registration is required.
Attend in-person
Parking: Parking is complimentary for attendees of the program.
COVID SAFETY: The health and safety of our participants, sponsors, volunteers and staff are our top priority. We continue to monitor CDC recommendations and will adhere to state and local COVID guidelines in place on the event day. Adjustments will be made if necessary.
The Parkinson’s Foundation South Central Chapter is grateful for the unwavering support of our Chapter Partners and Sponsors. Learn more about them by visiting our Chapter Supporter webpage.
In this session, we’ll explore how mindfulness and compassion practices can ease tension, reduce stress, and support emotional resilience for those navigating Parkinson’s.
