General Blogs

Social Media + YOU! A Call for Progress on the National Parkinson’s Project By Allie Signorelli

Thanks for all you do Allie! 

It can be overwhelming sometimes when you want to advocate but you’re not sure where to start? Well, here you go! Just Copy and Paste and you are on your way! 

 

Talking Points

PD Advocate Allie Signorelli has put together talking points for tomorrow to make it easier on you. And here are some customizable social media posts.

 

SOCIAL MEDIA POSTS

 

X / Bluesky (short, punchy, hashtag-forward)

Option 1

Two years after Congress passed the National Plan to End Parkinson’s and 17 months after it became law, we still haven’t seen a public PD plan.

@[MemberHandle] @[MemberHandle] @[MemberHandle] Where is the PD Plan? #whereisthePDplan

Option 2

Parkinson’s is the fastest-growing brain disease, but the National Parkinson’s Project is still invisible to patients and families.

@[MemberHandle] as your constituent, I’m asking: When will we see the PD Plan? #whereisthePDplan

Option 3

Congress passed the National Plan to End Parkinson’s with overwhelming bipartisan support. The President signed it.

Now we need action. @[MemberHandle] please demand a timeline and public update from HHS. #whereisthePDplan

Option 4

Dear @[MemberHandle], You helped make the National Parkinson’s Project law. People with PD and our care partners deserve to know what’s happening next.

Will you share a timeline and status update? #whereisthePDplan

 

Facebook (a bit more context, still skimmable)

Option 1

I’m joining a patient-led day of action to ask a simple question: Where is the PD Plan?

Two years after the House passed the National Plan to End Parkinson’s and 17 months after it was signed into law, the Parkinson’s community has seen no clear public update on the National Parkinson’s Project, the Advisory Council, or a timeline for a national plan.

@[MemberHandle1], @[MemberHandle2], @[MemberHandle3]: As your constituent, I’m asking you to demand a public timeline and status update from HHS and to share what you learn with us.

Parkinson’s is not waiting. Please don’t either.

#whereisthePDplan

 

Option 2

The National Plan to End Parkinson’s became law with strong bipartisan support, but people living with Parkinson’s and our care partners are still in the dark.

We need answers:

  • Who is leading the National Parkinson’s Project?
  • When will the Advisory Council meet?
  • When will the first national PD plan be released?

 

@[MemberHandle1] @[MemberHandle2] @[MemberHandle3], please use your oversight role to get a timeline from HHS and share it publicly.

 

Where is the PD Plan? #whereisthePDplan

Option 3

I live with / care for someone with Parkinson’s. My family is doing everything it can. Congress already did its part by passing the National Plan to End Parkinson’s.

What’s missing is visible follow-through.

@[MemberHandle1] @[MemberHandle2] @[MemberHandle3], I’m asking you to: 􈆆􈆊 Request a public timeline and status update on the National Parkinson’s Project. 􈆆􈆋 Ensure people with PD and care partners are included on the Advisory Council. 􈆆􈆌 Share what you learn with your constituents.

#whereisthePDplan

 

LinkedIn (policy + professional tone)

Option 1

On December 14, 2023, the House passed the National Plan to End Parkinson’s with a 407–9 vote. Seventeen months after it became law, people living with Parkinson’s and their care partners have yet to see a clear, public implementation plan.

As a constituent and member of PD Avengers, I’m asking my elected officials – @[MemberHandle1], @[MemberHandle2], @[MemberHandle3] – to: • Request a public timeline for the National Parkinson’s Project from HHS • Confirm when the Advisory Council will be seated and meet • Share that information transparently with the Parkinson’s community

Policy only matters when it is implemented. Where is the PD Plan?

#whereisthePDplan #Parkinsons #PublicHealth

 

Option 2

The National Parkinson’s Project was created to coordinate a national response to the world’s fastest-growing neurological condition. Right now, that coordination is largely invisible to the people it was meant to serve.

I’m joining a patient-led call to action asking: Where is the PD Plan?

@[MemberHandle1] @[MemberHandle2] @[MemberHandle3]: Please use your committee roles and oversight authority to secure a concrete timeline and public status update from HHS and ensure people with Parkinson’s and care partners have a seat at the table.

#whereisthePDplan #ParkinsonsDisease #HealthPolicy

 

Option 3

Parkinson’s imposes tens of billions in annual costs and immense human impact. Congress recognized this by passing the National Plan to End Parkinson’s.

What we need now is implementation, not silence.

As a constituent, I’m asking @[MemberHandle1], @[MemberHandle2], @[MemberHandle3] to press HHS for: • A public implementation timeline • A seated Advisory Council including people with Parkinson’s and care partners • Regular, transparent updates to the PD community

Where is the PD Plan? #whereisthePDplan

 

Bluesky (if you want slight variants from X)

Mechanics are basically the same; here are a couple that feel a bit more conversational:

Option 1

Congress passed a National Plan to End Parkinson’s. The President signed it.

People with PD and our care partners are still waiting to see the plan.

@[MemberHandle] will you push HHS to release a public timeline and update?

Where is the PD Plan? #whereisthePDplan

 

Option 2

Today I’m joining a patient-led action asking our elected officials a simple question:

Where is the PD Plan?

@[MemberHandle1] @[MemberHandle2] @[MemberHandle3] Parkinson’s is not slowing down. Please use your role to demand a status update and share it with the community.

#whereisthePDplan

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Want to share a Blog on a PD topic? Reach out to togetherforsharon@gmail.com