Take Action Today – Help with PANS PANDAS legislation!

 

Getting involved in advocacy is easier than you may think, but it is a critical advocacy effort. We need your help!
Start here: How to Assist with PANS/PANDAS Legislation for lots of fantastic information on getting started, including how to talk to your Legislators and ask for their support. See below for State Pages and additional PANS PANDAS Legislative Resources from ASPIRE. Email the Public Policy Committee today for more information on advocacy efforts in your state!

PANS and PANDAS are severe yet treatable neuroimmune disorders. Despite effective treatments like IVIG and antibiotics, many sufferers are denied care due to the lack of insurance coverage. Families often face an unsurmountable financial strain, leaving some patients without access to appropriate treatment, which can lead to a lifetime of suffering or devastating loss of life. Furthermore, schools absorb a significant financial burden of providing special educational and designated instructional services. Those fortunate enough to receive treatment experience life-changing improvements, as evidenced by survivors who went on to lead successful lives after overcoming PANS. However, the inequity in accessing care persists, leaving most without proper support or understanding. Urgent support is needed to ensure all affected individuals have access to essential medical interventions, enabling them to reclaim their lives and fulfill their potential.

How to Get Involved  Find Your State Legislator

Writing Point Tips 

Talking Point Tips 

Tools for State Leads!

We know that you, the State Leads, are connected to almost everyone in your state, but often, new families find ASPIRE before finding state groups. ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Calls to Action.

Testimony Letter

For all states working towards passing a bill, ASPIRE has two testimony letters we can update for your state. One is from the Board of Directors, and the other is from the Professional Advisory Board.

What we need from you:

  • What state you are in
  • Bill Number
  • Bill Name
  • Link to Bill
  • Who to address testimony to – Rep, Senator, Chairman, Committee Members, etc
  • Due date of testimony
  • Who to email testimony to with email
  • Additional information people need to know such as:
    • Who the bill sponsors are
    • If you don’t have a hearing date, who to email to try to secure one
    • Special concerns you would like people to know when writing testimony or a request to be given a bill number
    • Information about giving testimony in person, etc.
    • If you want people to order a specific ASPIRE shirt from our store if you are having a Legislative Advocacy event

If your state has both a House Bill and a Senate Bill running simultaneously, please let us know how you would like ASPIRE to address the letters with that in mind. Some states want separate letters, while others allow you to include bill numbers and address both House and Senate members in the same letter.

 

Call to Action and Update Requests

When it comes time to enlist your fellow residents to contact your legislators, we are here to help! We will update Call to Action requests on your state page and help push the information out on our social media.

Legislative Resources from ASPIRE

pans pandas legislative action legislation insurance mandate aspire

  • How to talk to your state representative
  • Find your State Representative and State Senator in your district
  • ASPIRE Legislative Action: Information for Legislators Toolkit
  • Legislative Talking Tips
  • Legislative Writing Points and Examples
    • Visit Section Today!
      • What to Include in Testimony Letters and Talking Points
      • Impact Statement Examples
      • About PANS/PANDAS Examples
      • Short Form Support Emails
  • State Pages
    • See below

Legislative Resources