named programs · 8 · from sources
What they call their work
Eastside Parkinson Support Group
Monthly in-person support group on the first Wednesday featuring speakers and group discussions, held at Fairport Public Library.
Home Safety Self Assessment Tool (HSSAT)
Resource developed to help prevent falls among older adults with Parkinson's by identifying home safety risks.
Limitless Caregivers Support Group
Monthly support group for caregivers held on the last Tuesday at Webster Rec Center, offering supervised activities for loved ones.
PD Support Group
Monthly support group on the first Thursday at Lifespan of Greater Rochester, open to all affected by Parkinson's.
Parkinson Support Group of the Finger Lakes (PSGFL)
Monthly in-person and Zoom-based support groups with separate sessions for people with Parkinson's and care partners, based in Canandaigua.
Rochester Regional Health PD Education & Support Group
Hybrid (in-person and Zoom) monthly education and support group on the third Wednesday, hosted by Rochester Regional Health.
Travel Checklist for Parkinson's
Downloadable guide to assist individuals with Parkinson's in preparing for travel, adapted from the Davis Phinney Foundation.
Westside Support Group
Monthly support group for individuals affected by Parkinson's in the western part of the region (specific details not fully listed).
activities · 5 groups
What they do
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Parkinson's Disease Research and Support 2 activities
- Information and resource navigation servicesProvides curated informational resources, including a travel checklist and a directory of Parkinson's-savvy services, to help individuals and families manage life with Parkinson’s disease. Offers education and community outreach through volunteer networks and events.
- Support groups for individuals with Parkinson's and care partnersHosts and supports multiple monthly Parkinson's disease support groups across the Greater Rochester, NY region, including specialized groups for women, caregivers, young-onset patients, and hybrid in-person/Zoom formats. These groups provide peer support, education, and connection for patients and their loved ones.
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Community Wellness Movement Classes 1 activity
- Fitness and wellness grant programOffers the Move for Wellness Grant to help individuals with Parkinson’s access local fitness programs and movement-based wellness opportunities.
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Healthcare Policy Advocacy 1 activity
- Policy and community advocacyAdvocates for policies and practices that aim to prevent Parkinson’s disease and improve treatment, care, and quality of life for individuals affected by the disease.
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Neurological Disorder Research & Rehabilitation 1 activity
- Research participation facilitationFacilitates participation in research by recruiting individuals into a volunteer research registry for future neurology studies and promoting access to student-led surveys on exercise and support group experiences among people with Parkinson’s.
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Respite Care for Developmental Disabilities 1 activity
- Respite and companion care servicesProvides paid companion care to offer respite for eligible care partners of people with Parkinson’s disease in Monroe, Genesee, Livingston, Ontario, Orleans, and Wayne Counties.
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financials · form 990EZ · fy2023
revenue
Total revenue$11K
Contributions & grants$11K100%
Program service revenue$00%
Investment income$00%
Other revenue$0
expenses
Total expenses$1K
Program expenses—
Admin / overhead—
Fundraising—
Salaries & benefits$0
Grants paid out$0
balance sheet
Total assets$175K
Cash—
Investments—
Liabilities—
Net assets$175K
1 years on record · 2023–2023
leadership · form 990 part vii · fy2023
Who runs it
board members · 7
- Daniel Kinel — Board Director
- David Henning — Board Treasurer
- Dennis Whitney — Board Director
- Kevin Hylton — Board President
- Michelle Burack MD — Board Secretary
- Ron Knight — Board Director
- Yvonne Selbig Hykton — Board Director
relationships · 13
Who they work with
- CND Life Sciences Partner — Lists CND Life Sciences as a special thanks partner for a Proactive Brain Health event.
- Davis Phinney Foundation Partner — Collaborates with the Davis Phinney Foundation to provide a travel checklist tool for individuals with Parkinson's disease.
- DriveOn Partner — Offers specialized driving training for people with Parkinson's through Rochester Rehab.
- Facebook Network — Uses Facebook to share updates and connect with constituents.
- Lifespan of Greater Rochester Partner — Hosts the PD Support Group at its Rochester facility.
- Nazareth University Partner — Collaborates on a survey about perceived benefits and barriers of group exercise and support groups for individuals with Parkinson's disease.
- PMD Alliance Partner — Partners with PMD Alliance to present educational content on vision issues and proactive brain health for individuals impacted by Parkinson's disease.
- Parkinson Support Group of the Finger Lakes Partner — Collaborates on support services and shares resources for people with Parkinson's and care partners in the Finger Lakes region.
- Proactive Brain Health Alliance Partner — Collaborates with the Proactive Brain Health Alliance on a livestream series focused on reducing risk and managing preclinical stages of neurodegenerative diseases.
- Rochester Regional Health Partner — Co-sponsors the Rochester Regional Health PD Education & Support Group.
- Rochester Women vs Parkinson's Partner — Collaborates with a volunteer group of women diagnosed with Parkinson's to educate the community and advocate for policy change.
- Weill Cornell Medicine Partner — Partners on the STREAM 2.0 study to develop interventions supporting daily living and independence for aging adults with Parkinson's disease and mild memory loss.
- York Wellness Rehabilitation Institute @ Nazareth University Partner — Provides pro bono therapy services to individuals with Parkinson's through student clinicians.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Community-Centered Support Modelmethodology: community_connectionBy connecting individuals affected by Parkinson's Disease to information, resources, and peer relationships, we improve quality of life because social connection reduces isolation, enhances coping, and empowers self-advocacy.
- Movement-as-Therapy Approachmethodology: movement_as_therapyBy promoting movement as a core therapeutic strategy and supporting access to enjoyable exercise environments, we improve physical and emotional well-being because sustained physical activity is clinically linked to slower disease progression and improved quality of life.
- Peer-Led Skill Building for Empowermentmethodology: peer_support_and_skill_buildingBy facilitating peer-led support groups focused on stress reduction, coping, communication, and self-advocacy, we build resilience and reduce isolation because lived-experience-driven learning fosters trust, engagement, and practical skill adoption.
- Personalized Care Through Symptom Awarenessmethodology: personalized_symptom_managementBy using relatable analogies like the "salad bar" model to illustrate symptom variability, we improve care engagement because personalized understanding helps individuals and caregivers adopt tailored management strategies.
- Research Engagement via Registrymethodology: research_registryBy maintaining a volunteer research registry, we increase access to clinical and scientific opportunities because centralized, consented data lowers barriers to participation and accelerates research inclusion.