Parkinson & Movement Disorder Alliance

Rather than do more of what other organizations were already doing well or affiliating with any one institution, Parkinson & Movement Disorder Alliance (PMD Alliance) chose to maintain our independence so we could draw from all available resources. We dedicate our efforts to shifting the paradigm surrounding the care and wellbeing of people with Parkinson disease and other movement disorders while addressing their unmet needs. We know that no one with a movement disorder exists in isolation. We care for the whole system recognizing that a stronger system creates healthier people.

Unlike other organizations in the movement disorder space, PMD Alliance doesn’t focus entirely on the person with the disease. Instead, we developed our Movement Disorder Care & Support Ecosystem™ (www.PMDAlliance.org ), which succinctly identifies the people and roles likely to influence quality of life for anyone with a progressive neurodegenerative disease. Once we identified these roles, we took the next step: to provide educational events, online programs, and social opportunities that would enhance the knowledge, skills, and mindsets of individuals in the ecosystem regarding care for the person with the disease.

A diagnosis of Parkinson’s or another progressive degenerative movement disorder (i.e. Huntington’s, tardive dystonia, dyskinesia, essential tremor) not only affects the person with the disease but also those who love and care for them. PMD Alliance uses a capacity-building and change model to design and deliver effective programs that increase capacity within communities, households, families, and support groups. Our model is dynamic. It delivers new programming yearly to promote continued skill building for every member of the Movement Disorder Care & Support Ecosystem™.

Rather than do more of what other organizations are already successfully doing or affiliating with an institution or medical facility, we maintain our independence. We appreciate the good work that many local and community-based non-profit organizations perform and enthusiastically offer our support to them. In this way, we draw from all available resources and partner with a wide range of professionals (including over 100 movement disorder specialists), organizations, and institutions across the country. We create innovative, action-oriented, forward-thinking programs with measurable outcomes, scalable potential, and long-term appeal to partnership and funding sources.

Our team comes from a variety of positions in healthcare, hospital systems, corporate operations, and non-profit management. This diversity of experience and skills strengthens us to more effectively serve the needs of people impacted by movement disorders as we also exercise prudent business management practices.
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Steeped in design thinking and employing validated design thinking strategies, we use our unique research and service design model to ensure that PMD Alliance programs and events always offer relevant information that engages, inspires, and empowers participants. We routinely survey participants both before and after events. We are especially pleased by frequent comments from participants who have, over the years, attended conferences and workshops offered by other organizations. Their anecdotes about experiencing a powerful level of transformation and connection at our events never get old. The same is true of donors and funders.

With a staff that works remotely, PMD Alliance incurs very little overhead expense. Employee compensation is designed to be competitive and economically sustainable. Our revenues grew from $250,000 in Year One to more than $1 million in Year Four, thanks to the financial support of funders and donors who appreciate aligning with our vision.

We are a values-based organization that demonstrates our transparency every day. Our careful selection of staff ensures they are ready to work within a fast-paced and strategic design based environment. As a result, we have had zero staff turnovers since our inception. Additionally, with more than 1,800 support groups in our network, PMD Alliance is the only organization with support groups, exercise programs, and organizations listed for all 50 states on our website.

We regard our many funders and donors as essential partners in achieving our goals. Our base of individual donors grows each year, as does our capacity to attract major funding sources.

Drawing on the staff’s knowledge of Parkinson’s and the overwhelming support of movement disorder specialists, we developed a series of live events that would grow to encompass not only the person with the disease but also their primary caregiver (usually the spouse), adult children, and support group leaders.

We continue to develop our website, www.PMDAlliance.org. At every opportunity, we gather names and email addresses and send out a monthly E-news that reflects our attitudes about the health and well-being of the whole person, useful and inspiring information, and announcements about upcoming events. The website is the only resource for people seeking a one-stop source for support groups, therapy and exercise groups across the US. Our various facilitated and private Facebook groups provide a safe place for people with shared perspectives to candidly communicate with each other.

Realizing that live events would never scale sufficient to meet our outreach goals, in 2017 PMD Alliance began developing a set of live-stream online programs so anyone with a computer or telephone could participate, regardless of where they lived. Once again, we found healthcare and other professionals enthusiastic to volunteer. We are now the leader in innovating live-stream programming. By 2019, we were reaching underserved communities in 43 states and 5 countries.

Recognized internationally for building a culture with expertise in strategic design, PMD Alliance was invited to present at the International Conference of Strategic Design Innovation in England. We were also invited to present at two World Parkinson Congresses, one in Portland Oregon, and the other in Kyoto, Japan. Our article on the impact of nonmotor symptoms on people with Parkinson’s and their care partners can be found in several publications and media sites. We enjoy partnerships with more than 10 non-profit organizations across the country, enabling a deeper level of service in more communities.

As the recognized national leader in Support Group Leader education, we serve 1,800+ support group leaders through our network and workshops.Our embrace of support group leaders serves as an effective “trickle-down” program that ultimately benefits thousands of local support group members in every part of the USA.Over the next several years, we will continue to deepen and expand our partnerships to more thoroughly reach people impacted by movement disorders. Our work will continue to include constant scrutiny of what we do and how we do it. We will carry on tracking outcomes and use them to direct us to more effective results. Just as important, we will continue to seek new solutions to old problems and diligently watch the horizon for new opportunities to actualize our mission and goals.