CurePSP Joins the Unified Parkinson’s Advocacy Council

CurePSP is excited to announce that we have joined the Unified Parkinson’s Advocacy Council (UPAC)! UPAC was created by the Michael J. Fox Foundation to represent the needs of people living with Parkinson’s disease (PD) and atypical parkinsonism diagnoses and to foster collaboration between organizations with similar interests and missions to accomplish this. Joining UPAC is an intentional and critical step in CurePSP’s role in larger-scale advocacy efforts for people impacted by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). It is a partnership that has the potential to lead to real change!

Joining UPAC comes at a particularly significant time in United States history, given the introduction of the National Plan to End Parkinson’s Act to Congress. This important bipartisan legislation, initially put forth by Representatives Paul Tonko (D-NY) and Gus Bilirakis (R-FL) to the U.S. House of Representatives, is the first-ever bill solely devoted to addressing PD and atypical parkinsonism diagnoses, including PSP, CBD, and MSA. Following that momentum, Senators Chris Murphy (D-CT) and Shelley Moore Capito (R-WV) introduced a Senate companion bill for the National Plan to End Parkinson’s Act (H.R. 8585/S.4581)! CurePSP is thrilled to see PSP, CBD, and MSA specifically named in this bill, marking an extraordinary move in bringing awareness to these otherwise underrecognized diagnoses.

If passed, the National Plan to End Parkinson’s Act would bring unprecedented funding to preventing, treating, and curing PD and atypical parkinsonisms. It aims to unify the Federal Government, patients, caregivers, and community and health stakeholders in the fight against these diseases. It will also help secure access to care and support for people living with these diagnoses and their families, which is critical to quality of life with PD, PSP, CBD, MSA, and related diseases.

For PD and atypical parkinsonism diseases, the comprehensive National Plan to End Parkinson’s Act will:

• Create an increase in federal research funding to prevent, cure, and reverse the diseases
• Develop a more streamlined approval process for treatments
• Create new and improved models for patient care, with a specific interest in decreasing health disparities in treatment
• Align federal departments to increase collaboration of research and services
• Develop standards and measures to prevent the diseases
• Coordinate a national plan to track cases
• Improve the early diagnosis of these diseases
• Increase public engagement and public awareness
• Decrease the use of toxins that may contribute to disease risk
• (and more)

Next steps for the bill:

The bill must be passed in the House and the Senate before it can go to the President for his signature. Your consistent and steadfast involvement and advocacy (yes, yours!) is crucial to passing this bill, including contacting your electing officials.

Once the bill passes into law, the real work will begin for the Federal Government, patients, care partner representatives, and medical professionals to collaboratively flesh out the details of the plan. CurePSP will monitor this process closely and look to you, our community, for ideas and contributions as the National Plan is developed and implemented.

Two steps you can take to be a CurePSP advocate for the National Plan to End Parkinson’s Act:

1. Stay tuned as we develop a CurePSP advocacy toolkit and material specific to PSP, CBD, and MSA, and raise awareness about H.R.8585/S.4581! For now, sign up for CurePSP advocacy news and updates here.
2. The first opportunity for advocacy is to increase the number of co-sponsors of the bill to demonstrate how vital this bill is to the PSP, CBD, and MSA community and that we are counting on them to make H.R.8585/S.4581 a top priority. To make this happen, your Representative in the U.S. House needs to hear from you! Please complete this form created by the Michael J. Fox Foundation. It is easy to do and only takes about 90 seconds.

Read the full bill here

For any questions, please email info@curepsp.org