April 20, 2022 / Advocacy

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

Parent Project Muscular Dystrophy by: Parent Project Muscular Dystrophy

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.
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House members who have already signed on:

Member FirstMember LastState Party
CollinAllredTXD
TroyBaldersonOHR
NanetteBarraganCAD
AmiBeraCAD
GusBilirakisFLR
LisaBlunt RochesterDED
CarolynBourdeauxGAD
JuliaBrownleyCAD
CoriBushMOD
AndreCarsonIND
TroyCarterLAD
SeanCastenILD
EmmanuelCleaverMOD
SteveCohenTND
GeraldConnollyVAD
JoeCourtneyCTD
JasonCrowCOD
ShariceDavidsKSD
DannyDavisILD
Peter DeFazioORD
AntonioDelgadoNYD
MarkDeSaulnierCAD
TedDeutchFLD
DebbieDingellMID
DwightEvansPAD
LizzieFletcherTXD
BillFosterILD
AndrewGarbarinoNYR
MaryGay ScanlonPAD
JaredGoldenMER
JoshGottheimerNJD
AlGreenTXD
MichaelGuestMSR
JahanaHayesCTD
BrianHigginsNYD
JimHimesCTD
ChrisJacobsNYR
SaraJacobsCAD
JohnKatkoNYR
WilliamKeatingMAD
FredKellerPAR
DanKildeeMID
RajaKrishnamoorthiILD
DavidKustoffTNR
ConorLambPAD
JohnLarsonCTD
TedLieuCAD
Stephen LynchMAD
TomMalinowskiNJD
NicoleMalliotakisNYR
CarolynMaloneyNYD
DorisMatsuiCAD
LucyMcBathGAD
JamesMcGovernMAD
JosephMorelleNYD
SethMoultonMAD
JerroldNadlerNYD
JoeNeguseCOD
Jimmy PanettaCAD
Bill PascrellNJD
ChelliePingreeMED
BillPoseyFLD
AyannaPressleyMAD
JamieRaskinMDD
KathleenRiceNYD
JohnRoseTNR
LucilleRoybal-AllardCAD
JanSchakowskyILD
TerriSewellALD
MikieSherrillNJD
ElissaSlotkinMID
AdamSmithWAD
DarrenSotoFLD
AbigailSpanbergerVAD
EliseStefanikNYR
HaleyStevensMID
MarilynStricklandWAD
MarkTakanoCAD
ClaudiaTenneyNYR
RashidaTlaibMID
Michael WaltzFLR
Peter WelchVTD
SusanWildPAD
NikemaWilliamsGAD
JohnYarmuthKYD

Senate members who have already signed on:

Senator NameState
Debbie StabenowMI
Angus King Jr.ME
Chris Van HollenMD
Elizabeth WarrenMA
Sherrod BrownOH
Richard BlumenthalCT
Kirsten GilibrandNY
Jacky RosenNV
Mark KellyAZ
Robert MenendezNJ
Amy KlobucharMN
Edward MarkeyMA
Gary PetersMI
Tammy BaldwinWI
Michael BennetCO
Cory BookerNJ
Jeanne ShaheenNH
Rick ScottFL
Kevin CramerND
Roger WickerMS
Susan CollinsME
Roger MarhsallKS

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

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