Episode 3: Navigating a Diagnosis With CurePSP’s Patient and Care Partner Advocacy Team

People living with PSP, CBD or MSA face a unique set of challenges that require specialized and informed experts. Meet the CurePSP Patient Care Partner and Advocacy team: Jessica, Courtney, Kelsey and Joanna, the versatile group behind the phone calls, educational resources and Capitol Hill advocacy efforts that are building genuine community connections for those navigating these rare diseases.

They discuss how support groups have evolved into hubs of both emotional support and practical medical education, why finding others who speak this unique language can be life-changing and how an emerging palliative care approach focused on dignity and quality of life could transform outcomes.

At the heart of CurePSP’s mission, this team works to reduce diagnostic delays, expand the specialized Centers of Care network and ensure families have access to quality resources regardless of language, location or financial barriers. Through legislative wins, expanded care networks and direct family support, the PCA team is creating tangible change for a community that continues to find joy and connection despite the challenges.

Resources mentioned:

• Support Groups
• Educational Resources
• Advocacy Page