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Community Bulletin Board
April 12th International Parkinson’s Day Celebrations with Dr Verhagen! – Chicago, IL
Come celebrate International Parkinson’s Day with Dr. Verhagen, movement disorder neurologist out of Northwestern University! Learn more about latest treatment options for Parkinson’s and connect with peers on this special day honoring Parkinson’s. Light bites will be served throughout discussion. Don’t miss this empowering event!!
In recognition of Parkinson’s Awareness Month in April, the West Morris Area YMCA, located at 14 Dover Chester Road in Randolph, NJ, in collaboration with ADPA, will host a Parkinson’s Open House & Symposium on Wednesday, April 9, 2025.
The day begins with an all-levels Rock Steady Boxing class at 10:00am-11:00am. Current West Morris Area YMCA RSB participants may participate in the class. All others are welcome to observe.
The event will feature a Parkinson’s Health Fair from 11:00am-12:00pm including: APDA, Parkinson’s Foundation NJ/PA Chapter, Atlantic Rehabilitation, LMR Edler Care, Medtronic, Abbott, Wen Beauty, and Stretch Source.
Followed by an APDA sponsored lunch & learn featuring Lisa Bayer, JD, CCM, Aging Life Care Manager, Advanced Professional, LMR Elder Care and Laurie Fidacaro, MA, CCC-SLP, LSVT-LOUD Certified, SPEAK-OUT Provider, Atlantic Rehabilitation.
This event is free and open to both West Morris Area YMCA members and the community. To register, please visit our website.
Please contact Ann Marie Peterson, Associate Director of Health & Wellness at: annmarie@wmaymca.org with any questions.
“Pump it Up for Parkinson’s” at NHC Greenville
Please join us at NHC Greenville April 10th, 9:00-2:00, to raise awareness of and promote resources for Parkinson’s Disease Care.
We will have booths including representation from GAPS, NuPlazid, Home Health, Dietary, and Screenings for Falls, Speech and Swallowing from our LSVT certified BIG/LOUD Parkinson’s therapists, with home exercise programs.
A lunch and learn will take place from 11:30-1:30 to include the following topics: What a CPDC (Certified Parkinson’s Disease Care Center- we are the first in the state!) can offer, Basics of Disease Process of Parkinson’s by our NuPlazid Rep, Benefits of BIG/LOUD certified therapy to maintain functional levels with demonstrations, and Healthy Eating for Parkinson’s by our Registered Dietitian.
Please see our attached digital invitation.
Research Study Monitoring Speech Changes in Parkinson’s Disease: Looking for New Participants!
This study aims to better understand how the physiological speech system changes in aging population with and without neurological disorders. The outcomes of this study have important clinical implications in developing better diagnostic and management practices for neurodegenerative diseases that affect communication (e.g., ALS, Parkinson’s disease) to improve the quality of life for the affected individuals. To attain this long-term goal, we first need to establish “norms” by better understanding the speech mechanisms in aging population. Therefore, we are looking for individuals aged 50 years or older to participate in this study. We use non-invasive surface electrodes to measure the movements of speech organs such as the tongue, jaw, and lips and the activities of facial muscles. In addition, we also provide a brief hearing screening, ask participants to complete a few questionnaires, and record their speech.
This study takes place in Lawrence, Kansas and takes 2 hours to complete. We provide $20 for completed participation, as well as free parking. Please contact bfieldman@kumc.edu with any questions or interest in enrolling.
Living With Tremors: What Are My Options? – Cherry Hill, NJ – April 12th
Join us for an exciting day in Cherry Hill creating awareness, educating on the treatment options and providing hope and healing over tremors! This in-person event with Penn Medicine’s Dr. Casey Halpern, along with a panel of experts, as they discuss the latest advancements in Essential Tremor and Parkinson’s tremor treatment. View the flyer here.
Spark the Night – TD Bank Ballpark in Bridgewater, NJ – April 11th, 2025
Join the PD Avengers in support for a special blue lighting in recognition of World Parkinson’s Day on April 11, 2025 at TD Bank Ballpark, home to the Somerset Patriots, New York Yankees Double-A Minor League Baseball game vs. the Reading Fightin’ Phils (PHI).
On behalf of the Global Alliance to End Parkinson’s Disease Association, we invite you to join us in an initiative to illuminate 11.8 million lights for the 11.8 million individuals living with Parkinson’s Disease worldwide. We believe lighting up landmarks can be a powerful symbol of solidarity and advocacy for Parkinson Disease awareness. View the flyer Here.
“What I Didn’t Say – A Journey Through Parkinson’s” Play – Orlando, FL – March 1st & 2nd
PACF is proud to bring you the nationally acclaimed play, “What I Didn’t Say – A Journey Through Parkinson’s” for a much-anticipated Central Florida debut Saturday March 1 and Sunday, March 2 at the Plaza Live Theater.
Every performance will be followed by a conversation/Q&A during audience members can ask questions of the playwright, local Movement Disorder Specialists Dr. Ramon Rodriguez or Dr. Lourdes Benes of Neurology One and PACF leadership. Learn More Here. View the Flyer Here.
Tickets are only $10. Purchase Here.
PD Care Connection Experience Event – Scottsdale, AZ – March 12 – 14th 2025.
The FREE event will take place March 13th-14th, 2025. Over the two-day event, PWP’s and their families will have opportunities to connect with providers, products and services. There will be something for everyone from first diagnosis to advanced Parkinson’s disease (PD).
PD Care Connection’s mission is to bring hope and options for care while a cure is pursued. To meet this objective, we will connect PWP’s, their care partners, healthcare providers and the community, to the potentially beneficial care options, services, and products available to them. With these educational events, participants will learn about multiple options and connect PWP’s with providers of goods or services, enabling them to have a better quality of life.
Go to www.pdcareconnection.org to learn more or access the flyer here.
CARe Connections (Competence, Autonomy, Relatedness, & Connections): Your Voice Matters! Share Your Thoughts on Caregiving! Paid Opportunity!
We want to hear from you for an NIH funded study to build holistic support for care partners of persons with Parkinson’s disease (PD) and Lewy-body Dementia (LBD). If you were or are a care partner, or a person with PD or LBD, or someone who was or is a paid caregiver to a person with PD or LBD, your insights will help inform the development of better support for those who are currently caring for someone with PD and LBD!
All participation is virtual. Contact us if you meet any of the following criteria:
- A current or a former informal/family carer of a person with PD or LBD & 50 years or older
- A paid caregiver (e.g., home health aide) of a person with PD or LBD
- A person with PD or LBD and 60 years or older
Interested in participating? Please contact the research coordinator at
Care_connections@URMC.rochester.edu OR Call 585-953-7153.
Advances In Parkinson’s Disease: A Virtual Series for Persons With PD & PD Caregivers
A diagnosis of Parkinson’s disease (PD) can be devastating for patients and their loved ones. It is critical that throughout the disease course that patients and those that care for them, have accurate and up to date information and support to successfully live with PD. It is also important that patients have multiple sources of information to fully understand their disease, symptoms, treatment options and how to get the most from their interactions with their healthcare professionals.
Speakers: Dr. Rajesh Pahwa, Dr. Stuart Isaacson, Dr. Daniel Kremens, and Dr. Kelly Lyons
This is a 5 course virtual series for Parkinson’s disease patients and their caregivers. Each course would be 60-90 minutes with a 20 to 30-minute presentation of each topic followed by Q&A from the audience. The courses will be held on various evenings in January and February 2025. There will be no charge to attend the programs.
Please visit www.parkinsoneducation.net to register
Film Launch! Impulse Control Behavioural Disorder by Fernwerk Films
This short film explores the complex issues of impulse control disorders from the perspective of those affected and their families, highlighting the significant everyday challenges they often face in silence. The film is enhanced with interviews from esteemed experts such as Prof. Dan Weintraub and Prof. Kay Redfield Jamison, which add valuable scientific insights.
To activate subtitles: Click on the Settings icon (gear symbol) at the bottom right. Select ‘Subtitles’ and choose your preferred language.
The Artist’s Voice – Parkinson’s Artists League
Parkinson’s Artists League is seeking creative people with Parkinson’s to participate in an inspirational and diverse art exhibit. Whether you are a painter, a poet, a photographer, a sculptor, a musician, etc., let’s bring your talent to the public’s awareness. Let’s acknowledge our creative spirit!
For more information, please contact Jane Besso at pdartistsleague@gmail.com.
Arizona Conference Opportunity – PD Care Connection Experience: March 12-14, 2025
This is a free event with prominent speakers about therapeutic interventions & research.
Clinilabs Essential Tremor and Parkinson’s Non-invasive Study
Clinilabs is now enrolling adults with essential tremor and Parkinson’s disease for a new, non-invasive research study to collect data via a wearable technology. No medication is involved in this study.
We encourage you to review the participation requirements listed below.
Qualified participants must be:
- Between the ages of 18 – 80 years old, inclusive
- Diagnosed with essential tremor or early-stage tremor-dominant Parkinson’s disease
- Currently experiencing tremor in their dominant hand
- Able and willing to:
- Attend visits in Midtown Manhattan, NY
- Complete a screening visit, study visit, and follow-up phone call
Are you or your loved one living with Parkinson’s Disease? Share your experiences!
A research study is inviting people diagnosed with Parkinson’s Disease, and their care partners, to take part in a virtual interview to learn more about their experiences and how their symptoms impact daily life.
If you were diagnosed with Parkinson’s Disease five years ago or longer and are experiencing “on-off” symptom fluctuations, you may be eligible to participate. The conversation will take approximately 75 minutes and can be conducted in one sitting or broken up into two sessions. Qualified patients will receive $175 as a thank you for completing the interview(s). If you have a caregiver, they may also be eligible to participate in a 90-minute interview. Caregivers who qualify and complete the interview will receive $200.
All information and responses will remain confidential. Participants must live in the US and must be able to provide confirmation of diagnosis. To see if you qualify for the study or to get more information, please visit pinpointpatientrecruiting.com/parkinsonsdisease or contact Ingles Adams at ingles@pinpointpatientrecruiting.com.
Parkinson’s Research with Inclusion, Diversity, and Equity from the University of Las Vegas
This study is focused on understanding the health and health care needs of individuals living with Parkinson’s and their caregivers. The study consists of a 45min phone survey with people with Parkinson’s and/or their caregivers. All participants who complete the survey will receive a $25 Visa gift card. Additionally, caregivers who identify as members of the LGBTQ+ community may also participate in one-on-one interviews for an additional $25 Visa gift card.
This study is ending soon, and it is your last chance to share your thoughts. To participate, please call 1-888-709-7689.
Young Onset Parkinson’s Disease? You are not alone! Wednesday, September 25th
Location: Clark, New Jersey
Caregiver Retreat on Friday, November 8th, 12:30 -2:30 pm. This event is for caregivers to learn, refresh, and re-energize.
Location: Richmond VA Medical Center Multi-purpose room
Register by calling or emailing Jessica Kaplan: 804-675-5931 or Jessica.Kaplan2@va.gov
Virtual Poetry Workshop
The Quiver is hosting its third annual poetry workshop. The theme this year is “Finding Solace”. This online only workshop will be led by Tara Broderick, who has trained at The Institute for Poetic Medicine. Classes begin in October!
Celebrating Shawshank’s 30th and Exploring the Parkinson’s Prison Live Virtual Event
Join your host Robert Cochrane, PhD Monday, September 2nd as he shares clips and stories about the number one rated film on IMDB for over 16 years. Robert coined the phrase “Parkinson’s prison” during his doctoral research to describe the psychosocial and emotional experience of living with Parkinson’s disease (PD) by participants in his research. Learn More Here.
National NIH-funded study testing an educational program for family caregivers of people with Parkinson’s Disease Dementia or Lewy Body Dementia.
PERSEVERE is a national study funded by the National Institutes of Health, led by Dr. Jori Fleisher at Rush University Medical Center in Chicago, IL, which is testing an educational program for family caregivers of people with Parkinson’s Disease with cognitive impairment, Parkinson’s Disease Dementia, Dementia with Lewy Bodies, or Lewy Body Dementia. PERSEVERE will test whether a disease-specific, caregiver-centered educational intervention improves caregiver knowledge, confidence, strain, and health outcomes. Family caregivers will receive weekly educational guidance through a 12-week curriculum with resources and activities. All participation is virtual and scheduled when it works for you.
Interested in learning more or see if you qualify?
Visit https://redcap.link/PERSEVERE1 to watch a video providing more information about the study, hear testimonials from prior PERSEVERE study participants, and completed the pre-screening survey. Email persevere@rush.edu with questions.
Digital Advance Care Planning Across the Healthcare Continuum – Wednesday, July 17 at 2:00 pm Eastern
Digital advance care planning is a valuable and necessary component of patient care to ensure high-quality, accessible, and coordinated care. Five Wishes and MyDirectives have created an easy-to-use, patient-centered digital approach to advance care planning that is integrated into clinical workflows and captures crucial data for reporting. Together, Five Wishes and MyDirectives help ensure that the voices of patients, families and clinicians are clearly reflected, collected, and easily retrieved.
Join us for an informative webinar that will explore how Five Wishes Digital, powered by MyDirectives, and MyDirectives for Clinicians can help your organization enhance quality, meet requirements, and serve your patients.
Parkinson’s Connect Live – Free Virtual Courses Led by Speech Language Pathologists
Connect with individuals living with Parkinson’s Disease through virtual conversation and support groups facilitated by speech language pathologists. Parkinson’s Connect Live groups are designed for people living with Parkinson’s Disease and their caregivers. All groups will meet via Zoom and are free to join! Download The Flyer or Visit the Website
Annapolis, MD – The Parkinson’s Play
Watch “What I Didn’t Say: A Journey Through Parkinson’s” by Matthew Moore – artist, comedian, educator, and playwright. Join MAPS Saturday, June 22nd at The Michael E. Busch Annapolis Library. Click Here To For FREE Registration
Online survey: understanding preferences for advanced Parkinson’s treatments
Looking for people with advanced Parkinson’s disease or their caregivers to take part in a survey. Your participation will help us gather valuable insights into the benefits, risks, and administration preferences of various treatment options. GET THE FLYER HERE
Power in Knowing: Black PD Group
Any member of the Black Community living with Parkinson’s disease/Parkinsonisms or their care partners are welcome to join the Virtual Group the 3rd Tuesday of every month. Click Here For More Information.
Indiana – IU Health & Parkinson Foundation PD Symposium
Saturday, May 4, 2024 – Join the Parkinson’s Foundation and IU Health, A Parkinson’s Foundation Center of Excellence, for their in-person, Parkinson’s Symposium. They will discuss important topics for living well with Parkinson’s. Learn about local Parkinson’s resources, What’s New in the Pipeline, Nutrition and PD, and How to Build Your Care Team. LEARN MORE HERE
Rock Steady Boxing: YOPD Survey
A YOPD taskforce was developed by the Rock Steady Boxing to look at exercise trends and barriers in the YOPD population. Completion of this survey will give insight into the exercise habits and barriers to exercise in the YOPD community. Information gained from the survey will help guide the development of exercise going forward.
Survey Link: Exercise Engagement Among Young Onset Parkinson’s Disease Patients
“How to Shake the Shakes” free, virtual tremor seminar offered by UCLA Health
This is a free, virtual (via Zoom), informational seminar hosted by a UCLA movement disorders neurologist, Dr. Krishe Menezes and a UCLA functional neurosurgeon, Dr. Ausaf Bari. Dr. Menezes will cover disease state origins and medication treatments and coping strategies for management of tremor due to ET and PD and Dr. Bari will speak about neurosurgical interventions that treat tremor including DBS and focused ultrasound. This is a two hour informational session followed by Q & A. The event will begin at 9am PST on Saturday, April 27, 2024. RSVP and registration link are included on the attached flier.
Parkinson’s Disease Survey
Researchers at the University of Nevada Las Vegas are seeking people who have Parkinson’s disease for a survey on how Parkinson’s disease affects physical activity, habits, mood, thinking, and other behaviors. The survey aims to appraise how these factors affect their balance, walking, and fall risk. We hope the responses obtained from this survey will aid in designing more targeted interventions that are relevant and effective in preventing and/or reducing falls and improving balance and quality of life of these individuals.
The survey will take between 45-60 minutes to complete. Please be assured that all surveys will be completed anonymously. However, participants may also choose to enter a raffle for a $100 gift card by expressing their interest at the end of the survey. If you have questions, please contact the principal investigator, Dr. Merrill Landers at merrill.landers@unlv.edu or 702-895-1377.
You can click this link to complete the survey.
Developing and Evaluating a Symptom Management Resource for Young-onset Parkinson’s Disease
This study consists of a pre-survey, access to the Symptom Management Resource, and a survey to provide feedback on the Resource. The symptom management resource contains occupational therapy-based strategies that target young-onset Parkinson’s disease symptoms and are intended to assist individuals to remain actively involved in their desired daily occupations and enjoy a quality of life they value. This anonymous study has been approved by the Russell Sage College Institutional Review Board which ensures the research design is ethical and anonymous.
Visit this link to participate and access the resource.
Research Opportunity: Smartphone eye-tracking as a digital biomarker for fatigue and cognitive health.
This is an early-adopter opportunity for continuous cognitive health monitoring to establish your baseline and track changes over time. Eye-tracking is an objective measure, eye movements are involuntary and cannot be faked. Fatigue surveys are subjective and relative.
We guide you through the process from start to finish and answer your questions, including:
- Smartphone app installation and setup (Android and iOS)
- Eye-tracking calibration
- Eye-tracking test
- Self-reported fatigue survey
- Report on your fatigue and comparison to the data collected from all participants
PHASE 2 of the Speech Accessibility Project (SAP) is currently recruiting
Help make automatic speech recognition more accessible to the PD community!
LSVT-Global and the University of Illinois need 200 new patients in 6 months and really need your help! Join this project from home and make $180, plus and your helper can make $90.
Learn more here.
Virginia Power Over Parkinson’s Golf Tournament
Sept 16 at Hunting Hawk Golf Club in Glen Allen, VA.
View flyer here.
Parkinson’s Patient Community Conference
A free, hybrid conference (virtual and in-person) for people with Parkinson’s Disease and those who care for them, hosted by Cedars-Sinai on Saturday, 4/27/2024.
View flyer here.
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
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!
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
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.
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
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.
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.
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
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!
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.
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
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
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.
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
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.
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.
