CurePSP Advocacy Priorities (U.S.)

Tell us: What policies and government advocacy do you want CurePSP to work on in the United States?

As CurePSP grows our advocacy initiatives in the U.S., we are eager to hear directly from our community. We want to know what issues you think are most important for us to address. When it comes to legislative, policy and government advocacy, we mean supporting certain bills and policies or filing bills in Congress. While we are starting at the federal level, we hope to eventually expand our advocacy to the state level.

Your feedback will help us prioritize what legislative issues to focus on under the three pillars of our mission: care, consciousness, and cure and will guide us as we craft CurePSP's first-ever public policy and legislative advocacy agenda.

Note: At this time, we are only looking for survey responses from people living in the U.S. We plan to eventually create a separate survey focusing on advocacy priorities specific to Canada and perhaps other areas.

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* 1. Which disease are you most connected to/have personal experience with:

Progressive supranuclear palsy (PSP)

Corticobasal degeneration/syndrome (CBD/CBS)

Multiple system atrophy (MSA)

Possible PSP, CBD/CBS, MSA or Parkinsonism but not a more specific diagnosis

Other (please specify)

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* 2. What is your relationship to the diagnosis?

I am the person living with the disease

Care partner/family member/friend of someone living with the disease

The person living with the disease AND someone else (e.g. care partner) are completing this together

Care partner/family member/friend of someone who had passed away with the disease

Medical professional who provides care for people with PSP/CBD/MSA

Other (please specify)

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* 3. In your experience, what is THE biggest unmet need related to PSP/CBD/MSA? Please tell us in a few sentences.

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* 4. Please rank the following issues around the CARE pillar in the order of which you would like to see CurePSP address through legislative advocacy, with the top choice being the most important.

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* 5. Is there anything you would like to add about your top choices around care-related advocacy? Adding specific examples helps us to understand and focus on what is most pressing.

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* 6. Please rank the following issues around the CONSCIOUSNESS pillar in the order of which you would like to see CurePSP address through legislative advocacy, with the top choice being the most important.

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* 7. Is there anything you would like to add about your top consciousness-related advocacy choices? Adding specific examples helps us to understand and focus on what is most pressing.

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* 8. Please rank the following issues around the CURE pillar in the order of which you would like to see CurePSP address through legislative advocacy, with the top choice being the most important.

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* 9. Is there anything you would like to add about your top cure-related advocacy choices? Adding specific examples helps us to understand and focus on what is most pressing.

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* 10. Are there are additional issues that you would like CurePSP to consider for advocacy when looking at legislation or policy gaps/needs?

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* 11. How interested are you in becoming involved and/or taking action in support of legislative advocacy with CurePSP? Select all that apply.

Send an email or call my members of Congress to support a bill I care about

Attend a virtual meeting with my member of Congress and/or their staff about a bill I care about

Attend an in-person meeting with my member of Congress and/or their staff about a bill I care about

Join an advocacy committee at CurePSP that is focused on prioritizing what legislative initiatives to support/create and engaging community members in advocacy

Become a CurePSP Advocacy Ambassador and attend virtual trainings on empowering others to advocate

I'd like to get involved in CurePSP's advocacy efforts in another way (please specify)

None of the above - I am not interested in participating in legislative advocacy at this time