Representing CurePSP at the World Parkinson Congress

Many people with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) and multiple system atrophy (MSA) are initially diagnosed with Parkinsons’ disease.

As related conditions, PSP, CBD and MSA often look like Parkinson’s disease in earlier stages. But over time, differences show up; like not responding well to medications, seeing a faster progression than expected or the development of unusual symptoms. As rare conditions, many professionals are unfamiliar with these nuances, and it often takes a long time to receive a correct diagnosis. However, it’s important to diagnose PSP, CBD or MSA as early as possible so that people can start the right treatments and symptom management methods.

Increased awareness among healthcare professionals and the Parkinson’s community could help people receive the correct diagnosis more quickly, which can lead to better treatment and outcomes.

Because of this, I was excited for the opportunity to represent CurePSP and these diagnoses at the 2026 World Parkinson Congress (WPC) in May. The WPC is an international event, held every three years for both healthcare professionals and the Parkinson’s disease (PD) community. The program includes educational sessions, workshops and discussions that are open to all attendees, creating opportunities for learning and collaboration across the Parkinson’s community.

As I was preparing for the Congress, I expected that most of my conversations would be about the diagnoses and how they differ from Parkinson’s. And while I did have those conversations, I was really surprised that the majority of them were instead with people who have connections to the diseases. I met healthcare professionals who care for people with PSP, CBD and MSA, community members who have a friend or fellow support group member with an atypical diagnosis and even some people who recently received an updated PSP, CBD or MSA diagnosis from Parkinson’s. The overall theme of these conversations was that more people need to understand how these diseases differ from Parkinson’s so that people affected by them can get the support they need.

These conversations solidified the need to continue advocating for people with PSP, CBD and MSA within the Parkinson’s space. Not to take any room or energy from the Parkinson’s community, but to ensure that there is a designated place for people with these diagnoses; for people with PSP, CBD and MSA who are in Parkinson’s support groups, fitness programs and have friendships with people with “traditional” Parkinson’s.

I am so grateful for all of the Parkinson’s organizations, including the World Parkinson Coalition, who have worked with us to include PSP, CBD and MSA into their educational and support programming, and look forward to continuing the work of advocacy, education and awareness.