Community Bulletin Board

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.

2.14.24

Black PD Summit

Join Us Making Black History at the First Ever Black PD Summit! There are four remote sessions that are 100% FREE & no registration is required. Dates: Saturday February 10th, Friday February 16th, Sunday February 25th, and Saturday March 2nd. Learn more about SIG Black Diaspora Here.

Download the Flyer and Get Connected Here

1.25.24

Dancing with Parkinson’s Disease

Help further research on the benefits of dance for Parkinson’s Disease. Please take a brief, anonymous survey that takes less than 1 minute about your experience with dance as an individual with Parkinson’s Disease. The research study is being performed by three Masters of Science of Occupational Therapy students at New England Institute of Technology in Rhode Island to gain more knowledge on how individuals with PD feel about dance programs and how they have impacted their life. If you have any questions, please email dancePDsurvey@gmail.com. Download the Flyer Here. Thank you for your time and consideration!

Take The Survey Here

Fair and Accessible Parkinson’s Disease Screening using a Machine Learning-Powered Web Platform

Over 8.5 million individuals worldwide are estimated to be affected by Parkinson’s disease (PD), a neurodegenerative condition that significantly impacts a person’s motor function and daily life. Early detection plays a crucial role in effectively managing this disease, and various data sources can be utilized for its diagnosis. Notably, lower limb movements involving keyboard interactions and trackpad/touch screen activities have proven to be reliable indicators of PD using artificial intelligence (AI). The use of a computer as a sensor to detect PD is particularly desirable since digital devices are increasingly ubiquitous throughout the United States and therefore enable a scalable and accessible solution to PD screening.

The aim of our project is to improve Parkinson’s Disease (PD) screening using AI. This project addresses health disparities in AI-powered remote Parkinson’s Disease (PD) screening, focusing on the entire data pipeline. It collects diverse data, particularly from Native Hawaiians and Pacific Islanders (NHPI) in Hawaii, using a web-based PD AI classification system. The AI predictor is optimized through feature selection, and biases are mitigated using the “fairness regularization” algorithmic approach.

We will build upon an existing web-based PD AI classification system that we developed which records mouse and keyboard strokes in a series of short games and uses the computer data to predict whether the participants have a diagnosis of PD. Preliminary feasibility testing of the screening system has yielded promising results. Using this system, we will first run a series of inclusive participatory design sessions with NHPI communities to understand receptiveness to digital diagnostic systems for healthcare. Second, we will optimize our preliminary AI predictor using feature selection approaches. Third, we will mitigate the inherent biases of the AI model by employing an existing algorithmic fairness approach called “fairness regularization”.

For more information or to participate in the study, interested individuals can sign up Using This Link.

Acknowledging Purpose During Adversity 6 Week Virtual Group for People with PD

The American Parkinson Disease Association and UChicago Medicine are offering a support group for those diagnosed with Parkinson Disease that are experiencing a lack of purpose since the diagnosis. They will be discussing loss, transformation, resiliency, and ways to acknowledge strength and purpose. This 6 week group will be meeting on Thursday mornings from 10-11:30 CT from February 29th – April 4th. Registration is required and spots are limited. View the Flyer Here

Important PD Research

OPEN Health, on behalf of AbbVie, has designed a piece of research to understand what people with Parkinson’s preferences may be about different treatment options for advanced Parkinson’s such as infusion pumps or having deep brain stimulation. Take the Survey Here

Day One: Parkinson’s Prison and the Hero’s Journey to Escape

The Shawshank Redemption is thought by many to be one of the greatest films of all time. In the Day One program, we share Andy and Red’s journey like you’ve never seen it before – even if you’ve watched it hundreds of times. Because this time, we share how Andy’s greatest gift of hope is for you, too.

This new, evidence-based, clinically-tested writing program is open to people with PD, their care partners, family members, and friends. We meet online for 90 minutes, once per week over the course of 16 weeks. Participants will write one page per week about their experience and share it with classmates. Each participant is also expected to read and leave feedback on two of their fellow classmates pages as this is an ensemble-based program. We will start each session by moving to music that is themed to the stage of the Hero’s Journey, then play improvisation games that support our growth, understanding and connection to one another. We will also watch clips from Inside Out that demonstrate the Hero’s Journey. All sessions will be recorded so that students who have to miss a session at its scheduled time can catch up at their convenience. Learn More Here

12.12.23

Volunteers needed for Parkinson’s in older Hispanic adults research study.

This research study is looking to see if support from another person with Parkinson disease will be beneficial to increase exercise levels in Hispanic/Latino/Latinx people with Parkinson’s Disease. We will examine effects on physical health and the disease symptoms. Who can participate? If you are Hispanic/Latino/Lantinx Men & Women, 50 years old or older and have a diagnosis of Parkinson’s Disease you can participate in this study.

Click Here for flyer in both Spanish and English.
Perceptions of Voice Changes in Individuals with Parkinson’s
Explore the unique perspectives of Parkinson’s Disease (PD) caregivers in our research study conducted by Rebeca Higareda, a graduate student in NYU’s Communication Sciences and Disorders Master Program. We aim to understand the experiences of caregivers supporting individuals with PD and their observations of voice-related challenges.

To contribute your insights or learn more, click here.

December 14th – Virtual Event – CLOSE CONTACT for COUPLES with PD

Please join Judith Sachs, Founder and Director of Anyone Can Move, at InMotion, Cleveland, for an introduction to her signature program, CLOSE CONTACT for COUPLES with PD, this Thursday, December 14 at 4:30 EST.

If you’re a couple, living with the overlapping concerns of Parkinsons for PWP and care partner, this is for you. Learn movement techniques, communication strategies and ways to connect and become more intimate with one another as you re-calibrate roles in your relationship.

Register Here


Friday, December 1st, SW Florida Parkinson’s Disease Fall Symposium

Join our partners FOR FREE at the Parkinson’s Disease Treatment Center of SWFL and the Charlotte County Medical Society for an afternoon of education and community. Keynote speakers include: Ramon A. Gil, M.D., Richard B. Dewey Jr., M.D., and George Mandybur, M.D. Download The Flyer Here

11.07.23

Kansas City Area – Paid Research Opportunity for Adults with Mobility-Related Disability

The University of Kansas is conducting research to explore the effectiveness of adaptive Functional Fitness (e.g., CrossFit) on various health outcomes for adults with a permanent mobility-related disability.

They are recruiting adults (18+) who are interested in attending 3 Functional Fitness classes a week at one of four locations in the Kansas City area. Participants will complete online surveys and a brief exit interview. We will also ask that participants complete functional assessments (e.g., strength, flexibility) at the beginning and end of the study.

All participants will receive $100 and will have their memberships paid for the duration of the study.

If you are unsure whether you meet the requirements or have any questions at all, please feel free to email the Principal Investigator for this study, Dr. Lyndsie Koon, at lyndsiek@ku.edu or call 785-864-1611.

Download the Flyer for more information.

10.09.23

Share your voice with the Improving Speech Accessibility for Parkinson’s Disease Project!

Nearly 90% of individuals with Parkinson’s disease have disordered speech and voice. These disorders often limit the ability of these individuals to communicate with speech recognition software that is widely used today. How frustrating is it to call the doctor’s office or drug store and not be understood?

Now recruiting individuals with Parkinson’s to help speech recognition tools understand diverse voices. Patients may earn up to $180 and helpers may earn up to $90 for their time, which can range from a total of 3-5 hours, across a number of days if desired. Get Started Here!

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.

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 Parkinsons 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

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:

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!