We’re better together.
We believe in collaboration and in offering you the best resources from across our community. Read on to see additional resources near you.
Community Bulletin Board
09.12.23
September 13th – New York City
Let’s Talk About Parkinson’s Disease at the Parkinson’s and Brain Health Fair
The event aims to engage new and existing older adults, with a focus on members of the Spanish-speaking community, and will serve as a kick-off for the eight week series of Movimiento y Flujo classes we’ll be piloting this fall. View the Flyer Here
LEOPARD-PD study (Longitudinal Endpoint Optimization to Provide an Assessment of Relevant Drugs in Parkinson’s Disease.)
Adults with PD, sign up today! The purpose of this study is to assess the ability of the Parkinson’s Disease-Health Index (PD-HI) survey to measure patient-relevant changes in disease burden over time. This study is being conducted by the University of Rochester Center for Health + Technology (CHeT) in partnership with the Michael J. Fox Foundation. Sign Up Here
September 25th – Cedar Grove, WI
Parkinson’s Disease 101 with special guest Karen Blindauer, MD – Click Here For Official Flyer
September 29 through October 1 – Sacramento, CA
The Long Road to Hope has been officially accepted to the California Capital International Documentary Film Festival 2023! Learn More Here
Tightrope Impro Theatre – Improv for Parkinson’s Program
Starting again this fall!! We use improv as a way of building community and teaching skills that apply to life with Parkinson’s. Each of our classes is led by an experienced improv teacher, accompanied by a member of our PD Performance Troupe. For folks who are interested in giving improv a try, check out our upcoming courses below. Visit our website. For any questions, please contact rosemary@tightropetheatre.com.
October 14 – The Quiver: International Art Show
There is a body of research in cognitive science suggesting that the onset of Parkinson’s may produce a creative impulse in some. This International Art Show and Benefit will highlight this remarkable phenomenon with artists from at least 7 countries and 4 continents. Purchase Tickets Here. View Flyer
08.08.23
August 17th: Film Screening: Boys of Summer – A Caregiving Journey
Free virtual screening of the documentary “Boys of Summer: Short Stop” by Robert Cochrane. The film is the third in the series that has chronicled Robert’s journey with his father since his dad was diagnosed with Parkinson’s disease. That story started back in 2004 with a road trip to see a game in each of the major league ballparks, and continues in this film to explore how they have used the power of baseball to connect. Following the virtual screening, you will have an opportunity to ask Robert questions and hear from an AARP representative about available caregiving resources and tools. Learn More Here!
Participants Needed for Nutrition Research Study
The University of Florida Food Science and Human Nutrition Department is conducting a 10-week study to evaluate the effect of two commonly used dietary fibers (psyllium and wheat bran) on weight status and constipation symptoms compared to placebo in individuals with Parkinson’s disease. Learn More Here!
07.10.23
APDA Virtual Connecting Through Art – July 20th
Connecting Through Art is a creative arts program that offers people with Parkinson Disease the space and ability to express feelings, emotions, and daily concerns through the activity of drawing and painting. This program encourages participants to socialize virtually as they participate and share in this painting art activity. For people with Parkinson’s, participating in an art activity can help improve some of the symptoms of PD. Full Flyer Here.
06.09.23
Speech Accessibility Project Now Recruiting!
The University of Illinois Urbana-Champaign’ Speech Accessibility Project has begun enrolling participants. The project will recruit U.S. residents with Parkinson’s (including those with related neurological conditions like MSA, PSP, CBD, and post-DBS) and their care partners. Those interested in participating can sign up online. Led by UIUC with support from Amazon, Apple, Google, Meta, and Microsoft, the Speech Accessibility Project aims to make voice recognition technology more useful for people with a range of diverse speech patterns and disabilities, including but not limited to PD. Earn up to $180 helping research from the comfort of your own home- visit https://speechaccessibilityproject.beckman.illinois.edu/ for more information.
Sign the petition!
Tell Congress: Pass the National Plan to End Parkinson’s. Our friends at the Michael J. Fox Foundation are making it easy for you with their simple online form. Make your voice heard. Access the petition here!
The Motorvation Station Podcast
The Motorvation Station Podcast gets to the down and dirty of Parkinson’s Disease, and provides a deep dive into the real life impact of this condition. Listen to personal stories are riveting and their perseverance, through battles and loss, is simply astounding. The hosts have unique personalities and an approach towards “living well” that will leave you pondering your own place in this world, and surely how you can help yourself and others through life’s great struggles. Listen Here!
Women & PD Webinar with Dr. Farmer
PMD Alliance physician advisor Jill Farmer, DO, MPH speaks with Synapticure’s Jaime Hatcher Martin, MD about Women and Parkinson’s on June 12th. Register here!
PRIDE Dance Social
Ring in Pride Month with an online dance social, hosted by Rainbows of Aging, Stories of the Moment, and RISE! The dancing starts June 21st at 2:15 pm PST- learn more and sign up at bit.ly/PrideDanceSocial
05.12.23
Yes, And Exercise Jam for Joy
Presented by Yes, and Exercise, Jam for Joy is for people with PD, care partners and the medical/wellness staff who serve our community. It’s an hour of improvisational fun, connection and discovery in a safe/brave space where we show our full selves, have each others backs at all times, and know there are no wrong answers. Absolutely no experience is required – come as you are! https://www.yesandexercise.org/book-online
PRECEDENT-PD Study
Learn about a clinical research study evaluating the effects of an investigational drug on cognitive function in participants with Mild Cognitive Impairment (MCI) due to Parkinson’s disease. Visit www.precedentstudy.com or click here to view the flyer for more information.
I Am Movement – Orange County, California
Meet our friends at I Am Movement in Southern CA! Check out their home page for a dynamic line-up of movement, community, education and more at the home of Rock Steady Boxing Irvine https://iam-movement.com/
Urge Congress to Support the National Plan to End Parkinson’s!
Have you written, called, or emailed your legislators yet? Cure PSP created a wonderful resource page with phone scripts, email templates, and an overview of the steps needed to make this newly re-introduced bipartisan legislation a reality. Visit https://www.psp.org/npepa/ for their curated resources created in concert with the Michael J Fox Foundation.
Columbia University Autoimmune Study
Persons with Parkinson’s and care partners, help researchers at Columbia University better understand the role of immune response in Parkinson’s. Sign-up here if you are interested in participating or click here to view the flyer and learn more.
Cognitive Impairment Clinical Trial
Learn about a clinical research study evaluating an investigational drug to see if it may improve cognitive function in participants with Mild Cognitive Impairment (MCI) due to Parkinson’s disease. Visit www.precedentstudy.com or click here to view the flyer for more information.
6.7.23 Discover DBS: Advancing care in the treatment of Parkinson’s disease
If you or a loved one has been diagnosed with Parkinson’s disease, you may be considering your treatment options. Hear from Drew Falconer, MD, a Movement Disorder Specialist about living with Parkinson’s and whether DBS therapy can be an option for you. June 7th at 1— 2 p.m. PT. Click here to register or download the flyer. Additional webinar dates include: 07.12.2023, 08.02.2023, 09.06.2023
04.06.2023
Lancaster University Doctorate research study: Self-compassion and social support in the wellbeing of carers of people with Parkinson’s
Open to anyone aged 18 or older who provides unpaid care or support to someone with Parkinson’s. The purpose of this study is to increase understanding of the roles that self-compassion and social support may have in the wellbeing of care partners of people with Parkinson’s. Participate in the survey here.
PRIDE UNLV Healthcare Provider Survey
Researchers at the University of Nevada, Las Vegas are working on a project titled “Parkinson’s Research with Inclusion, Diversity, and Equity” which focuses on the health and health care needs of LGBTQIA+ people living with Parkinson’s disease and people who provide care to this community. This project is learning about the beliefs and practices of health care professionals who see patients diagnosed with Parkinson’s. Click here to participate.
PRIDE UNLV Phone Survey for People with Parkinson’s and Care Partners
Four million LGBTQIA+ adults age 50+ live in the U.S. We know very little about the needs of the LGBTQIA+ community living with Parkinson’s disease. This study is working with the LGBTQIA+ community to learn about the health needs of those living with Parkinson’s. We are also talking with caregivers and healthcare providers about their experiences. Call 1-888-709-7689 to participate or click here for more information.
Staying Connected through Communication Study
The University of Washington SPEAC Lab is inviting individuals with select communication-related diagnoses (including people with Parkinson’s) to answer survey questions about their communication experiences. We ask participants to nominate at least one family member, friend, or coworker to also answer survey questions. Your participation will help healthcare providers support others with communication disorders and the important people in their lives to stay connected through communication. This study is open to anyone in the U.S. Participate here.
Legislative Action Alerts – Alliance for Patient Access
Members of Congress need to hear from you! Weigh in on 2 bills to improve access to care by supporting step therapy reform and co-pay accumulator reform. Thanks to the Alliance for Patient Access and Movement Disorder Policy Coalition for their advocacy leadership! Click below to learn more about each bill:
- Support for H.R. 830, Co-pay Accumulator Legislation
- Support for S.652, Step Therapy Reform Legislation
Parkinson’s and Exercise Online Survey
The purpose of this study is to understand the associations between diagnosis of Parkinson’s disease, current physical habits, and current perceptions of health. Led by Sarah Thomas, PT, DPT, a PhD candidate at the University of Washington School of Rehabilitation Medicine, this study is recruiting both people who exercise AND people who do not exercise. All participants must have been diagnosed with Parkinson’s disease. Click here for more info.
03.01.2023
SMEK Survey
We’re SMEK (Sravya, Madison, Esha, and Katie)! We’re a team consisting of four motivated high school junior girls from North Carolina, looking to make a difference using technology. This year, we’re participating in a competition called Technovation, where we are required to build an app that helps to alleviate a particular issue.
This year, we are designing an app to help patients with Parkinson’s Disease, and would like to gain more perspective on this disease and the needs of Parkinson’s Disease patients. We’d like to learn more about the struggles they face and what we can do to help. TAKE THE SURVEY HERE.
Parkinson’s Wellness Report Assessment
The Parkinson Wellness Report is a free assessment that can help people evaluate their physical and non-motor symptoms related to Parkinson’s disease. The survey takes only a few minutes to complete and provides personalized recommendations for managing symptoms and improving quality of life.
You can access the Parkinson Wellness Report Assessment at the following link: https://www.beyondrehab.health/pd-assessment
02.22.2023
Survey: Use of aides/tools for Activities of Daily Living (ADL) for Parkinson’s and other movement disorders
The purpose of this survey is to gather information about what types of tools, aides or other products might be useful for people with Parkinson’s and related disorders. CLICK HERE to take the survey.
02.03.2023
STEM-PD Clinical Trial
Are you living with Parkinson’s symptoms? If so, you may be eligible to take part in a clinical trial that will determine whether a non-invasive investigational device improves motor and non-motor symptoms of Parkinson’s. CLICK HERE to learn more.
IT’S JUST PARKINSON’S Film Release
IT’S JUST PARKINSON’S is an inspiring and emotional look at one man’s journey to live life to the fullest while living with a disease that has no cure. WATCH THE FILM HERE.
Additional Resources
We also have a wide range of resources throughout the world to help you find local support groups, Parkinson’s organizations, exercise and wellness groups, treatment options, financial assistance, and more!
