activities · 26
what they do
direct service · 11
- Develop and maintain an inclusive Movement Disorders Ecosystem Organizational Website Redesign and LaunchLaunched a new, simplified Movement Disorders Ecosystem to be more inclusive and user-friendly, and invites community members to test the website for usability improvements.
- Develop and maintain an inclusive Movement Disorders Ecosystem Organizational Website Redesign and LaunchLaunched a new, simplified Movement Disorders Ecosystem and developed a new website with community input, inviting members to test for usability improvements.
- Empathy in Action Program Parkinson’s Community Support & Education ProgramsLed "Empathy in Action," featuring experiential stations that allow learners to hear from individuals with lived experience and simulate daily challenges faced by those with movement disorders.
- Facilitate Community Expression and Validation Parkinson’s Community Support & Education ProgramsProvides opportunities for individuals with Parkinson's to express their experiences and receive validation, including participation in art installations like "Soaring for Hope" at the World Parkinson Congress.
- Host Live Webinars and Maintain a Resource Library Equine Health Webinar & Recording DisseminationOffers live, interactive webinars featuring experts on Parkinson's and movement disorders, and maintains a library of recordings from past webinars for ongoing access.
- Host community events and conferences Parkinson’s Community Support & Education ProgramsOrganizes various events, including "Live it Up!™ Drive In Events" and conferences for specific groups like adult children of people with Parkinson's, to provide support and engagement opportunities.
- Movement Disorders Ecosystem Launch Organizational Website Redesign and LaunchLaunched a new, simplified Movement Disorders Ecosystem that is more inclusive and user-friendly, enhancing access to resources for individuals affected by movement disorders.
- Organize Community Engagement Events Parkinson’s Community Support & Education ProgramsHosts various community engagement events, such as "Live it Up!™ Drive In Events" and conferences for family members and care partners of people with Parkinson's.
- Provide educational webinars and resources Equine Health Webinar & Recording DisseminationOffers live, interactive webinars featuring experts on Parkinson's and movement disorders, and maintains a library of recordings from past webinars for ongoing access.
- Provide experiential learning and empathy training Parkinson’s Community Support & Education ProgramsLeads "Empathy in Action" programs with experiential stations to help learners understand the lived experiences and daily challenges of movement disorders.
- Webinars on Parkinson's and Movement Disorders Equine Health Webinar & Recording DisseminationOffers live, interactive webinars featuring experts in Parkinson's and movement disorders, and maintains a library of recordings from past webinars for broader access.
research · 2
- Conduct Community-Based Research and Education Community Needs Assessment & ResearchConducts surveys and reflections on community insights and barriers to access, using findings to develop continuing medical education courses and experiential learning programs like "Empathy in Action" for healthcare providers.
- Conduct community-based research and surveys Community Needs Assessment & ResearchSurveys the community to understand experiences and barriers, using findings to inform educational courses and reflect on community insights.
capacity building · 13
- Certified Parkinson’s Disease Care Program Dementia & Movement Disorder Care CertificationOperates the Certified Parkinson’s Disease Care (CPDC) program, which expanded by 2023 to serve all long-term care communities and professional care providers, with 37 certified providers in 17 states.
- Certify Parkinson's Disease Care Providers Dementia & Movement Disorder Care CertificationOperates the Certified Parkinson’s Disease Care (CPDC) program, which certifies professional care providers in long-term care communities, with 37 actively certified providers in 17 states by 2023.
- Certify Parkinson's disease care providers Dementia & Movement Disorder Care CertificationManages the Certified Parkinson’s Disease Care (CPDC) program, which certifies professional care providers and long-term care communities in Parkinson's care across 17 states.
- Certify professional care providers in Parkinson's disease care Dementia & Movement Disorder Care CertificationManages the Certified Parkinson’s Disease Care (CPDC) program, which certifies professional care providers in long-term care communities across 17 states.
- Develop and Improve Digital Resources Organizational Website Redesign and LaunchDevelops and refines digital resources, including a new brand and website, and a simplified Movement Disorders Ecosystem, with community input and usability testing to enhance inclusivity and user-friendliness.
- Early-Career Healthcare Provider CohortsLaunched the Early-Career Healthcare Provider Cohorts in 2023, matching Movement Disorder Fellows and Neurology Residents with mentors for one-on-one guidance.
- Mentor early-career healthcare providersOperates the Early-Career Healthcare Provider Cohorts program, matching Movement Disorder Fellows and Neurology Residents with specialist mentors for one-on-one guidance.
- On-Demand Fundamentals Training for Community Leaders Parkinson's-Specific Exercise & Therapist Training ProgramsCompleted an on-demand fundamentals training in 2025 for community leaders to create and sustain support groups for Parkinson's and movement disorders.
- Provide Mentorship for Early-Career Healthcare ProvidersOperates the Early-Career Healthcare Provider Cohorts program, matching Movement Disorder Fellows and Neurology Residents with Movement Disorder Specialist mentors for one-on-one guidance.
- Provide experiential learning for healthcare providers Parkinson’s Community Support & Education ProgramsLeads "Empathy in Action" sessions with experiential stations to help healthcare professionals understand the lived experiences and daily challenges of individuals with movement disorders.
- Support Group Leader Training Peer Support Certification TrainingProvided training and hands-on support to support group leaders across the country in 2020, facilitating the transition of in-person groups to virtual formats.
- Train and Support Parkinson's Support Group Leaders Peer Support Certification TrainingProvides training and hands-on support to support group leaders across the country, assisting them in transitioning to virtual spaces and developing on-demand fundamentals training for creating and sustaining support groups.
- Train and support Parkinson's support group leaders Peer Support Certification TrainingProvides training and hands-on support to support group leaders, including assistance with transitioning to virtual platforms and offering on-demand fundamentals training for creating and sustaining support groups.
strategies · 20
how they think
Theories of action extracted from this org's own source material. Click any to see the full field of orgs running the same approach.
- Broadening reach and accessibility through digital and community engagement remote_access_and_community_outreachThe organization leverages remote access technologies, social media influencers, and community advocates to disseminate information and resources widely, ensuring individuals can access expert guidance and support regardless of their location.
- Centering lived experience and feedback for continuous improvement patient-centered_design_and_feedbackThe organization amplifies the voices of people living with Parkinson's by centering their lived experiences in advocacy and communication. They also encourage ongoing feedback from the community to continuously improve and evolve their resources, ensuring their offerings are relevant and impactful.
- Community Engagement Through Content and Social Media social media engagementAmplifies reach and engagement by publishing community-contributed blogs, videos, and art, and by leveraging social media influencers to disseminate resources widely.
- Community-Centered Knowledge Dissemination and Support community_engagement_and_educationThe organization believes that by empowering community members, healthcare professionals, and advocates with relevant information, training, and platforms for sharing experiences, they can create a supportive ecosystem that improves the lives of individuals with Parkinson's and movement disorders. This includes leveraging digital and in-person channels to reach a broad audience and fostering a sense of community through shared knowledge and mutual support.
- Community-Led Support and Ecosystem Building community-led supportFosters local and peer-led support networks through trained leaders and community connectors who share lived experience and expertise, strengthening the broader movement disorder support ecosystem.
- Community-centered advocacy and outreach community_advocacy_and_outreachThe organization amplifies the voices of people living with Parkinson's by centering their lived experiences in advocacy and communication, and engages community advocates and influencers to disseminate information and resources widely, fostering a strong, informed community.
- Empowering individuals through accessible education and support accessible_education_and_supportThe organization provides comprehensive educational content, including videos and expert-led events, and facilitates community-led support groups to ensure individuals with Parkinson's and movement disorders have access to vital information and peer support, regardless of their location.
- Empowering individuals through education and community support patient_education_and_community_supportThe organization provides educational content, including videos and events with expert speakers, to inform individuals about Parkinson's disease treatments, protective brain health habits, and movement disorders. This is complemented by facilitating community-led support groups and wellness classes to create a supportive environment.
- Evidence-Based Education and Preventive Health Promotion evidence-based educationDelivers scientifically grounded education about Parkinson’s treatments, medications, and brain-protective behaviors, leveraging expert speakers and advanced understanding of neurodegeneration to promote proactive health.
- Evidence-based brain health promotion and continuous improvement evidence_based_improvementThe organization promotes protective habits for brain health through evidence-based education and leverages community research and feedback to continuously innovate and improve its resources and organizational approach.
- Feedback-Driven Organizational Improvement feedback-oriented improvementUses ongoing community feedback to iteratively improve resources, programming, and organizational strategy, including rebranding and structural changes.
- Feedback-Oriented Organizational Development continuous_improvementThe organization commits to a careful, planned, and community-driven approach to its own development and improvement, actively seeking and incorporating feedback from the community to ensure its resources and strategies remain relevant and effective.
- Fostering community engagement and well-being through diverse programming holistic_community_engagementThe organization encourages community participation through content creation, showcases artistic expressions, and offers wellness classes, creating a supportive and engaging environment that promotes overall well-being for individuals affected by movement disorders.
- Innovation in Community Support Delivery innovationDevelops innovative approaches to overcome barriers to participation and create safe, supportive environments for individuals affected by movement disorders.
- Patient-Centered Advocacy and Accessibility patient_advocacy_and_accessThe organization aims to amplify the voices of individuals living with Parkinson's by centering their lived experiences in advocacy efforts and ensuring broad access to expert guidance and resources, regardless of geographical location or other barriers. This involves strategic partnerships and innovative approaches to reach and serve the community.
- Patient-Centered Advocacy and Community Empowerment patient-centered advocacyCenters the lived experiences of people with Parkinson's and movement disorders in advocacy, content creation, and organizational development to amplify their voices and empower the community.
- Remote and Digital Access Expansion remote_access_outreachUses digital platforms to deliver expert-led educational programming, wellness classes, and resources on-demand and live, ensuring access for individuals regardless of geographic location.
- Strategic Partnerships and Professional Capacity Building healthcare partnershipsCollaborates with healthcare providers and certifies professional care providers in Parkinson’s care to expand the reach and quality of support within clinical and community settings.
- Strengthening the care ecosystem through partnerships and professional development ecosystem_strengtheningThe organization collaborates with healthcare providers to enhance patient access to tools and resources, and offers certification programs for professional care providers to improve the quality of Parkinson's care within communities.
- Strengthening the movement disorder ecosystem through partnerships and community-driven development ecosystem_building_and_partnershipsThe organization collaborates with healthcare providers and engages community connectors and researchers to gather insights, make tools accessible, and foster a robust support system. They also train and certify professional care providers to champion Parkinson's care within their communities, ensuring a comprehensive and responsive approach to community needs.
named programs · 4
what they call their work
Certified Parkinson’s Disease Care Evolution
Certification program for long-term care communities and professional care providers to enhance care for individuals with Parkinson's disease.
Empathy in Action
Experiential learning initiative aimed at educating healthcare providers about the challenges faced by individuals with movement disorders.
Live it Up!™ Drive In Event
Community event series designed to provide safe social engagement during the COVID-19 pandemic.
Proactive Brain Health Alliance
Initiative focused on promoting brain health and preventive measures for neurological diseases.
relationships · 10
who they work with
- Abbvie Partner — Provides information about Botox, used to relieve symptoms of cervical dystonia, strabismus, and overactive bladder.
- Akorn Inc. Partner — Provides information about Cogentin, a medication used with others to treat Parkinson's disease symptoms.
- Association of Movement Disorder Advanced Practice Providers (AMDAPP) Partner — Recognized the need for an organized network for APPs in movement disorders, leading to the origins of AMDAPP.
- Epic Theater Drive-In Partner — Hosted a "Live it Up!™ Drive In Event" at the Epic Theater Drive-In.
- Novartis Partner — Provides information about Exelon, a medication used to treat dementia caused by Alzheimer's or Parkinson's disease.
- PMD Alliance Partner — Collaborated internally to develop new branding and website.
- Proactive Brain Health Alliance Partner — Launched the Proactive Brain Health Alliance to help people at risk for neurological disease.
- Supernus Pharmaceuticals Partner — Provides information about Apokyn, a medication for advanced Parkinson's disease, and Myobloc, a treatment for cervical dystonia.
- UCB Partner — Provides information about Neupro skin patches, used to treat Parkinson's disease symptoms and restless legs syndrome.
- World Parkinson Congress Partner — Community participated in the 2019 World Parkinson Congress in Kyoto, Japan.