April 20, 2022 / Advocacy

Calling All Advocates! The House Deadline for the FY23 Funding Letter Is Closing Friday!

Members of the House and Senate are working, right now, to submit their policy priorities for the annual spending bills that will fund the NIH, CDC, DOD, FDA, and other key federal agencies for 2023.

The House deadline for the FY23 funding letter closes this Friday. Please reach out to your members today to ask that they sign onto the funding letter before it closes.

 

This year our request includes:

  • $8 million in funding for Muscular Dystrophy related programs at the Centers for Disease Control and Prevention (CDC).
  • $12 million in funding for the Department of Defense (DOD) Congressionally Directed Medical Research Program (CDMRP) for Duchenne research.
  • Request that Congress submit Duchenne report language to federal agencies that touch Duchenne. Report language provides guidance to the federal agencies, including CDC, NIH, and FDA, about how to spend funding (your tax dollars) related to Duchenne.
Take Action >

House members who have already signed on:

Member First NameMember Last NameState Party
CollinAllredTXD
NanetteBarraganCAD
JuliaBrownleyCAD
AndreCarsonIND
SeanCastenILD
EmmanuelCleaverMOD
SteveCohenTND
GeraldConnollyVAD
JasonCrowCOD
Peter DeFazioORD
AntonioDelgadoNYD
MarkDeSaulnierCAD
TedDeutchFLD
DebbieDingellMID
LizzieFletcherTXD
BillFosterILD
AndrewGarbarinoNYR
AlGreenTXD
MichaelGuestMSR
JahanaHayesCTD
BrianHigginsNYD
SaraJacobsCAD
FredKellerPAR
DavidKustoffTNR
ConorLambPAD
JohnLarsonCTD
TedLieuCAD
Stephen LynchMAD
TomMalinowskiNJD
NicoleMalliotakisNYR
CarolynMaloneyNYD
DorisMatsuiCAD
LucyMcBathGAD
JamesMcGovernMAD
JosephMorelleNYD
SethMoultonMAD
JerroldNadlerNYD
JoeNeguseCOD
ChelliePingreeMED
AyannaPressleyMAD
JamieRaskinMDD
KathleenRiceNYD
LucilleRoybal-AllardCAD
JanSchakowskyILD
TerriSewellALD
ElissaSlotkinMID
AdamSmithWAD
DarrenSotoFLD
EliseStefanikNYR
HaleyStevensMID
MarilynStricklandWAD
MarkTakanoCAD
ClaudiaTenneyNYR
RashidaTlaibMID
Peter WelchVTD
NikemaWilliamsGAD
JohnYarmuthKYD

We will keep you updated as the Senate letter deadline approaches.

We are also requesting members Cosponsor the BENEFIT Act

We ask that Senators and Members of Congress support the BENEFIT Act, S. 373 led by Sens. Wicker (R-MS) and Klobuchar (D-MN) in the Senate and H.R. 4427 led by Representatives Matsui (D-CA) and Wenstrup (R-OH) in the House.

This legislation builds on prior laws and will make sure patient engagement information is fully considered as part of the FDA benefit-risk framework, by requiring FDA to disclose how they use or incorporate patient experience data in the review of new therapies. Patient Experience Data is data that is collected from patients and families with the intention to provide information about patients’ experiences with a disease or condition, including the impact of the disease or condition or related therapy or, and patient preferences for treatments

Take Action >

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