Awareness Month is All About Advocacy

May is GBS|CIDP Awareness Month, and we are getting ready to celebrate all month long!  I can’t help but wonder where 2019 has gone, but that thought is overshadowed by my excitement for our 2019 Awareness Month Plans – Government Advocacy.  

Chelsey Fix on Capital Hill
Chelsey on Capitol HIll

If we haven’t met yet, I should probably introduce myself. My name is Chelsey Fix, and I am the (kind of) new Advocacy Manager here at the foundation. My hope is that I can help you bring your voice and story to the ears of people that make laws that impact our lives. Also, I want us to make changes in both federal and state policies that affect access to treatments. To do that, we set a Legislative Agenda, and now we want to share that Legislative Agenda with Congress. And this month, you are going to help us make sure that as many Senators and Representatives as possible know about our legislative agenda and that you – their constituent – are impacted by GBS, CIDP, or one of its variants.  

OK – so what’s our legislative agenda?

This year, our legislative agenda includes 4 specific asks that we will make to Congress. Each of these asks will improve the lives of our patients in some way, but it is just as important that Senators and Representatives hear YOUR GBS, CIDP, or variants story. Providing Congress with the details of your experiences helps them realize the importance of our Legislative Agenda, meaning that they are more likely to take action that makes our lives better. Here is what we are asking the 116th Congress:  

  1. Support legislation enacting a Medicare Part B Home Infusion Demonstration Project for patients with CIDP and MMN
  2. Continue to include Guillain-Barre Syndrome as a condition eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) for FY 2020
  3. Provide the National Institutes of Health (NIH) with at least $41.6 billion in FY 2020, a $2 billion funding increase
  4. Provide the Centers for Disease Control and Prevention (CDC) with $7.8 billion in FY 2020, a $500 million funding increase

You can learn more about our Legislative Agenda in the updated Advocacy Section of our website. You will also find information about “what is Advocacy”, an “Advocacy Toolkit”, vocabulary, news, and more.  

How do I Get Involved?

The best way to get a message to Senators and Representatives is through good old fashioned letter writing. We won’t be using pen and paper, though! Head on over to the Action Center, where you will find a quick template that you can fill in and review. Then, I will take your submission, figure out who your Senators and Representative are, and then will send your letter to a staff member in each of their offices.   

Our Goal = An Advocate from every state sends a letter to their Senators and Representative through the Action Center!

Not interested in Advocacy? International and still want to celebrate awareness month? Check out our “Ten Ways to Raise!” to find other ideas on how to raise awareness for GBS|CIDP Awareness Month.  

Thank you for helping us raise awareness throughout May, GBS|CIDP Awareness Month!



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