Objective: To describe the establishment of a community center, InMotion (IM), for persons with movement disorders.

Background: Needs of people with movement disorders grow with expansion of knowledge about motor and non-motor manifestations, and their treatment. The need for lay information guided by knowledgeable parties also grows. However, access and resources for patients have lagged behind. For example, extensive research has shown the value of physical activity for PD, but patients have difficulty finding places where they can safely carry out physicians’ recommendations.

Methods: We gathered a group of interested parties consisting of people with PD, a movement disorders specialist, an exercise coach, and philanthropists. We organized a board with varied expertise in nonprofit agencies, law, accounting, and development. We obtained nonprofit status. A Development Committee was charged with fundraising. Using seed money from a major donor, an architectural firm designed a space next to an existing physical fitness facility, including a multipurpose activity room/lecture hall, resource center/library, and meeting rooms. We drew up a program of targeted exercise, sport (boxing/cycling), dance, tai chi and vocal classes, began two series of monthly lectures, established separate support groups for patients and care partners, and set up a mentorship program for newly diagnosed patients. All offerings are provided to the community free of charge. Facility operations, administrative salaries, instructor fees and other expenses are fully supported by philanthropy.

Results: In the first 9 months since opening in March 2015, 444 clients registered, with over 40 new ones per month, making over 1,000 monthly visits to our various offerings. A large grant from a local philanthropic fund allowed us to expand from 3 to 5 days per week. To date, IM has raised over $1.3 million in pledges, of which over $900K has been collected.

Conclusions: It is feasible to open/operate a comprehensive community center for persons with movement disorders, independent of existing institutions with other missions and agendas. This model depends on the dedication of many individuals with varying backgrounds to raise funds, set and execute programs, and operate the facility. Nevertheless, our experience with the enthusiasm and support of our clients and the general community convince us that the effort has been highly worthwhile.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/establishment-of-inmotion-an-independent-fee-free-community-center-for-persons-with-movement-disorders/