As a result of 143 meetings with Members of Congress in Washington DC, and over 2,000 action alert emails sent by this community, we are pleased to report a very successful outcome for the Duchenne Fiscal Year 2020 (FY20) funding letters signatures.

79 members of Congress in total (59 in the House and 20 in the Senate) agreed to support our request sending a strong message of support behind Duchenne research, public health, drug development, and patient support initiatives. Both letters have bi-partisan support, which is really important for these efforts.

Please send thank you notes if your Senator(s) signed on. It is so important to show your appreciation for their support.

If you do not see your member signed on, remember, a signature is not the only measure of success. Success was achieved after you contacted your Members’ offices because you opened the door for more dialogue. We now have a touch point for future “asks” as well. As you know, we often have several action alerts on a variety of issues throughout the year. Also, without a signature they will still vote to approve the language in the final bill thanks to your outreach.

What happens next?

The timing for when the funding bill (known as appropriations) is finalized can often be unpredictable, they can be delayed for many reasons but they eventually get done. The good news is you have done the hard part already, ensuring the best chance for Duchenne related report language (download) is included in the bill to fund the agencies that impact Duchenne in the coming year. We will keep you posted when the bills pass through and are signed into law.

Thank you!

We appreciate that your time is precious, and we are grateful to everyone who made the trip to DC and to all those who advocated from home. This community is incredible and continues to lead the way in rare disease advocacy.  We are so proud of the work you did and continue to do!

House

First	Last	Party	State District
Colin	Allred	D	TX-32
Anthony	Brindisi	D	NY-22
Tony	Cardenas	D	CA-29
Andre	Carson	D	IN-7
Kathy	Castor	D	FL-14
William Lacy	Clay	D	MO-1
Steve	Cohen	D	TN-9
Chris	Collins	R	NY-27
Joe	Courtney	D	CT-2
Jason	Crow	D	CO-6
Danny K.	Davis	D	IL-7
Peter A.	DeFazio	D	OR-4
Antonio	Delgado	D	NY-19
Mark	DeSaulnier	D	CA-11
Ted	Deutch	D	FL-22
Brian	Fitzpatrick	R	PA-1
Jared	Golden	D	ME-2
Jahana	Hayes	D	CT-5
Brian	Higgins	D	NY-26
Jim	Himes	D	CT-4
Sheila	Jackson Lee	D	TX-18
William	Keating	D	MA-9
Andy	Kim	D	NJ-3
Peter	King*	R	NY-2
Raja	Krishnamoorthi	D	IL-8
Ted	Lieu	D	CA-33
Stephen	Lynch	D	MA-8
Carolyn B.	Maloney	D	NY-12
Tom	Malinowsky	D	NJ-7
Brian	Mast	R	FL-18
Doris	Matsui*	D	CA-6
Ben	McAdams	D	UT-4
James P.	McGovern	D	MA-2
Seth	Moulton	D	MA-6
Joe	Morelle	D	NY-25
Stephanie	Murphy	D	FL-3
Joe	Neguse	D	CO-2
Donald	Norcross	D	NJ-1
Alexandria	Ocasio-Cortez	D	NY-14
Jimmy	Panetta	D	CA-20
Chellie	Pingree	D	ME-1
Ayanna	Pressley	D	MA-7
Jamie	Raskin	D	MD-8
John	Ratcliffe	R	TX-4
Kathleen M.	Rice	D	NY-4
Lisa Blunt	Rochester	D	DE-AL
John	Rose	R	TN-6
Mary Gay	Scanlon	D	PA-5
Jan	Schakowsky	D	IL-9
Terri	Sewell	D	AL-9
Elissa	Slotkin	D	MI-8
Adam	Smith	D	WA-9
Darren	Soto	D	FL-9
Abigail	Spanberger	D	VA-7
Greg	Stanton	D	AZ-9
Mark	Takano	D	CA-41
Glenn "GT"	Thompson	R	PA-15
John	Yarmuth	D	KY-3
Lee	Zeldin	R	NY-1

Senate

First	Last	Party	State
Michael	Bennet	D	CO
Corey	Booker	D	NJ
Richard	Blumenthal	D	CT
Sherrod	Brown	D	OH
Susan	Collins	R	ME
Chris	Coons	D	DE
Dick	Durbin	D	IL
Kirsten	Gillibrand	D	NY
Angus	King	I	ME
Amy	Klobuchar	D	MN
Ed	Markey	D	MA
Chris	Murphy	D	CT
Gary	Peters	D	MI
Rick	Scott	R	FL
Jeanna	Shaheen	D	NH
Kyrsten	Sinema	D	AZ
Debbie	Stabenow*	D	MI
Chris	Van Hollen	D	MD
Elizabeth	Warren	D	MA
Roger	Wicker*	R	MS