Action Alert
Support Congressional Efforts to Advance and Expand Research into Peripheral Autoimmune Neuropathies, including GBS, CIDP, and variants
Background
Each year, Congress decides how much federal funding should be applied to medical research activities and provides guidance to the National Institutes of Health (NIH) on what conditions legislators are particularly interested in. They also identify which conditions should be eligible for study through the Department of Defense Peer-Reviewed Medical Research Program (PRMRP). Members of Congress are currently making critical decisions related to research priorities for fiscal year (FY) 2017 and we want them to actively support NIH and PRMRP activities focused on GBS, CIDP, and variants (peripheral autoimmune neuropathies).
One of the community’s champions on Capitol Hill, Congressman John Garamendi of California, has created a “sign on” letter asking his colleagues in the House of Representatives to demonstrate their support for expanded research activities at NIH and through the PRMRP. This letter officially asks for enhanced research into GBS (through the PRMRP) and into peripheral autoimmune neuropathies in general at NIH during FY 2017. A copy of the letter is attached.
Any member of the House can sign (including your Representative), but they will only join the effort if they are asked to do so by a constituent (you). The letter will close on Wednesday, March 16th, so please reach out to the office of your Representative in the very near future to secure their support. The more offices that sign the letter, the stronger the support for research into these conditions.
Take Action
If anyone would like to advocate on this, all you need to do is e-mail Phil Goglas at goglas@hmcw.org. Phil will connect you with you’re the office of your Representative. We have heard that advocates are contacting Congressman Garamendi’s office. Please DO NOT e-mail Bradley Bottoms, we need you to e-mail your Congressperson to get them to join Congressman Garamendi’s letter.
#1) You can identify your Representative by going to www.house.gov and entering your zip code where prompted. You can call the DC office (202 number), ask for the Health Legislative Assistant, and then use the message below to leave a brief voicemail.
OR
#2) You can personalize the message below and e-mail it to the community’s Washington Representative, Phil Goglas II, at goglas@hmcw.org. Phil will identify your House Representative for you as well as the appropriate staffer in your Congressperson’s office, and then forward your message on to them on your behalf.
OR
#3) If you have a pre-existing relationship with your Congressperson’s office (maybe through a Hill Day visit of local visit), please reach out to the staff contact you know and convey the message.
If you have any questions or if you would like at additional assistance, please contact Phil Goglas II at goglas@hmcw.org or (202) 544-7499.
Sample Message
Dear [Congressperson’s Name, Phil can add on your behalf]
I write you today as a constituent and as an individual impacted by a peripheral autoimmune neuropathy to ask that your office join the current FY 2017 sign on letter in support of research into Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (the chronic form of GBS), and related conditions. You may have seen GBS in the news recently as exposure to Zika virus is just one of many factors tied to the onset of symptoms. These conditions are serious, potentially disabling or life-threatening, and much more needs to be learned from a research perspective.
To join this sign on letter please contact Bradley Bottoms in the office of Congressman John Garamendi at bradley.bottoms@mail.house.gov or 5-1880. The letter will close on Wednesday, March 16th.
[Optional: Briefly tell your personal story and interest in this issue in 2-5 sentences]
Sincerely,
[Your Name]
[Your Address]