What CurePSP Will Do for You
As part of the commitment to our community, CurePSP is taking the following actions to ensure your needs are prioritized:
We are engaging with federal health agencies to identify gaps in research and care for PSP, CBD and MSA, and advocating to Congress for funding that directly supports those needs.
We are monitoring relevant federal legislation and funding changes, and will provide toolkits and resources to help you effectively communicate their impact to your elected officials.
We are launching targeted action alerts to mobilize you— the PSP, CBD and MSA community— around key policy issues and ensuring your voices and stories are heard by lawmakers and decision-makers.
We are collaborating with partner organizations in coalition efforts to align on policy priorities and messaging, amplifying our collective voice and advocacy influence.
We are continuing to provide access to disease-specific educational resources and support programs, foster research opportunities and promote best practices in person-centered care for our community.
Behind every data point on PSP, CBD and MSA is a person who has navigated an emotionally and physically taxing disease journey – each with their own daily challenges, strengths and hopes for answers. We know many of you have been personally touched by a rare, complex and debilitating neurodegenerative disease, and we appreciate your understanding that investing in comprehensive care and innovative research is both critical and urgent.
Thank you for continuously reminding us of our community’ s capacity for resilience and perseverance even in difficult moments, and for being an advocate alongside CurePSP.
For further advocacy updates and opportunities to get involved, please follow us on social media and continue to visit www. psp. org / advocacy