From a long-held wish to a labor of love

This article was provided by our partner, PMD Alliance. It has been reviewed by Bionews for accuracy and relevance. The views and opinions expressed are those of the author and do not necessarily reflect the views of Bionews or Parkinson’s News Today.

When I joined the Parkinson & Movement Disorder Alliance, or PMD Alliance team, three years ago, I inherited a support and exercise group directory that was functional, but woefully outdated.

The biggest challenge? Every group listing had to be manually created and updated by our small, remote team of around 15 people serving the entire nation. In the early days, we uploaded tons of group details, but keeping all that information accurate over time was a different story.

It became overwhelming, and unfortunately, outdated listings led to frustration and confusion for people looking for active groups. Because of this, we knew we had to and could do better.

About a year ago, our PMD Alliance team decided to shut down the old directory and work on improving our offerings. This was when we began creating a new system — one that allows community members to be active participants in posting and updating resources. With that support, our team’s grit and passion, and now with such excitement, our directory is now available and ready for our Parkinson’s and movement disorder community members!

Photo courtesy of PMD Alliance

An example of PMD Alliance’s newly launched support and exercise group directory. 

Granting a long-held wish for its predecessor, the new PMD Alliance Directory includes categories beyond groups, allowing users to search for providers, events, and more in one place. Each listing includes an annual expiration date, with automatic reminders to renew, so outdated information is a thing of the past. Built in-house by the PMD Alliance communications team, this one-of-a-kind tool promotes all the resources that serve our community’s needs, not just those featuring our logo.

“PMD Alliance is not scared to collaborate with other organizations and share the stage,” said Perry Heilman, PMD Alliance Ambassador and person with Parkinson’s disease, during our recent feedback session. Support group leaders and Ambassadors were some of the first to test the new directory process. Their insights and ideas continue to help us refine it for the entire community.

One big win for support groups is the new “PMD Alliance Trained” badge that will be added to every group led by someone who’s completed a live or on-demand Support Group Leader training with us. This is both to recognize the effort the leaders put into developing their skills and to help prospective members find a group best suited to their needs.

For example, a recently diagnosed person may have more questions and need more direction than someone who’s been in the community for many years. So, that person might want to first seek out a group run by an experienced, well-resourced leader to help show them the ropes and whom they may think of as a mentor.

This is only one example of how the new PMD Alliance Directory adapts to the many different needs and priorities of those affected by Parkinson’s or a movement disorder. With advanced search options to filter by diagnosis, experience, provider specialty, and more, we created a level of flexibility that just wasn’t possible with the old tool. But now, our community has this flexibility, which was long-needed and deserved.

An all-inclusive hub for movement disorder resources is a necessity to remove barriers to care, and the strongest solutions are those we build together.