Welcome to Fall Advocacy

Coming Soon- Fall Colors!

Congressional Recess officially ended on September 9th, and the Northeast is already seeing leaves fall from the trees (no color change, yet). Now that Washington, D.C. is back to being fully operational, we have a lot of great things to report on! Check out our highlights below, and stay up to date with all things GBS|CIDP Advocacy Related by following me on Twitter (@ChelsOnTheHill).

GBS is Eligible To Be Studied Under DOD PRMRP Grant Funding

This one has been a long time coming! We prioritized asking our Senators to include GBS on the list of conditions eligible to be studied by grants given through the Department of Defense’s Peer Reviewed Medical Research Program (DOD PRMRP) during Hill Day (almost 4 months ago).

We have finally received the official word that GBS was included in the Senate’s appropriations bill for next year’s DOD PRMRP! This is great news for the community as it gives our researchers a chance to compete for grants where there are typically less applicants. In fact, GBS|CIDP Global Medical Advisory Board Member Dr. Kazim Sheikh recently received a grant from this program. One of my favorite things about advocacy work is seeing Research & Advocacy come together – and this is EXACTLY THAT!

THANK YOU to the Hill Day crew for making this happen!

H.R. 2905 Update

Thanks to the August Advocacy and continued work of our community writing letters to their Representatives, we currently have 15(!!!!) cosponsors of HR 2905. Most importantly, we have continued to draw support from both Democrats and Republicans. This bill is bipartisan, and it is truly great to see party lines set aside for our patient community. Here is the current list of cosponsors:

  • Rep. Blumenauer, Earl [D-OR-3]
  • Rep. Holding, George [R-NC-1]
  • Rep. Butterfield, G. K. [D-NC-1
  • Rep. Kelly, Robin L. [D-IL-2]         
  • Rep. Garamendi, John [D-CA-3]
  • Rep. Sewell, Terri A. [D-AL-7]     
  • Rep. Marchant, Kenny [R-TX-24]
  • Rep. Davis, Susan A. [D-CA-53]  
  • Rep. Kelly, Mike [R-PA-16]          
  • Rep. Luria, Elaine G. [D-VA-2]
  • Rep. Evans, Dwight [D-PA-3]      
  • Rep. Matsui, Doris O. [D-CA-6]  
  • Rep. Smith, Adrian [R-NE-3]        
  • Rep. Price, David E. [D-NC-4]
  • Rep. Kind, Ron [D-WI-3]

If your Congressperson’s name is on this list, make sure you thank them with an email, tweet, or phone call. If they are not on this list, send them a letter by visiting our Advocacy Action Center (or emailing me for other creative ways to get in touch with their office).

We will continue to work with key Senators (meaning ones that serve on the Finance Committee) in the hopes of adding a Senate Companion bill. As a quick reminder, we need a bill to pass in both the House and the Senate for this to become enacted.

Other Random Updates

Lisa, myself, and our Health and Medicine of Washington Partners recently spent a day on Capitol Hill asking Representatives to become cosponsors of HR 2905. We were received with positive vibes and warmth. There was also a sense of “let’s get this done!” among the people we spoke with. We hope that the 12 offices we met with will become cosponsors soon!

NEW at all of our fall walks, chapter meetings, and regional conferences (Hello, Boston) is an Action Center “To-Go”! The registration desk at all of our fall events will have a form for you to complete, which will then come back to me. I will take your information from that form and turn it into a letter to your Congressperson asking them to cosponsor HR 2905. So, next time you are at a Foundation event, make sure you complete a form and encourage everyone around you to do the same!

I am collecting volunteers for our newly launched State-level advocacy program. If you are interested in learning more about the State Government + how to get involved, send me a message at chelsey.fix@gbs-cidp.org.

I can’t wait to continue our work together! Feel free to contact me at anytime with questions, suggestions, or enthusiasm for advocacy.
~Chelsey, Advocacy Manager