We Have The Best Advocates!

By Chelsey Fix, Advocacy Manager

This May, the GBS|CIDP community took Awareness Month
to a whole new level!

Patients and caregivers were encouraged to be their own best advocate by joining a congressional letter writing campaign (perhaps you read about it on our lively social media channels?!).  As the last day of GBS|CIDP awareness month approaches,I am very pleased (and proud!) to report that over 150 advocates wrote letters this month through the Advocacy Action Center, representing 37 states. Additionally, on May 23- AKA GBS|CIDP Hill Day –  32 advocates from all over the US joined me and other Foundation Representatives on Capitol Hill to meet with 52 different Congressional Offices to ask for support of the Foundation’s legislative agenda. We had a fantastic day on Capitol Hill, so be sure to check out our Facebook to see the full album of photos from Hill Day!

Vice President of the Board Matt LaRocco presented a stack of letters from the Action Center to a staff member in Congressman Blumenauer to show support for the Medicare IVIG Access Enhancement Act

During that very same week, Congressman Blumenauer and Congressman Holding introduced the Medicare IVIG Enhancement Act, which is a bill that would create the demonstration project in Medicare Part B to allow CIDP and MMN patients to receive IVIG infusions at home through their Medicare Part B benefit.  The bill was given the number of H.R. 2905. A full transcript from the introduction to the House of Representatives can be found here.

The whole team here at the Foundation offers our sincere gratitude to those who participated in the Awareness Month Advocacy campaign this May! We assure you that your voice will be heard and our efforts will continue as our mission gains strength each and every day.

If you would like to get involved, find out more about our legislative agenda and learn how to get started with advocacy efforts by clicking here or contacting me,  Advocacy Manager, Chelsey Fix at Chelsey.fix@gbs-cidp.org.

 

 

Thank You!