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Archive for SMA Treatment Acceleration Act

Is your Congressman or Senator on this list?

Posted: March 31st, 2011 | By: Caroline Gibson | No Comments
Thursday, March 31st, 2011

Dear Friends in the Fight,

Given the change in leadership on Capitol Hill, we are talking to our supporters in the House and Senate about the best path forward to secure additional federal resources for SMA research.  In a time of immense budget challenges in Washington, the SMA community’s voice becomes even more critical to ensure that federal resources remain focused on finding a treatment and cure for spinal muscular atrophy. If your  Congressman or Senator is on this list, please contact us as soon as possible for next steps! If you know someone who lives in one of these Members’ districts, please forward this page to them!


HOUSE OF REPRESENTATIVES


ENERGY & COMMERCE COMMITTEE

Majority Minority
  • Fred Upton, Michigan, Chairman
  • Joe Barton, Texas, Chair Emeritus
  • Cliff Stearns, Florida
  • Ed Whitfield, Kentucky
  • John Shimkus, Illinois
  • Joseph R. Pitts, Pennsylvania
  • Mary Bono Mack, California
  • Greg Walden, Oregon
  • Lee Terry, Nebraska
  • Mike Rogers, Michigan
  • Sue Myrick, North Carolina, Vice Chair
  • John Sullivan, Oklahoma
  • Tim Murphy, Pennsylvania
  • Michael C. Burgess, Texas
  • Marsha Blackburn, Tennessee
  • Brian Bilbray, California
  • Charlie Bass, New Hampshire
  • Phil Gingrey, Georgia
  • Steve Scalise, Louisiana
  • Bob Latta, Ohio
  • Cathy McMorris Rodgers, Washington
  • Gregg Harper, Mississippi
  • Leonard Lance, New Jersey
  • Bill Cassidy, Louisiana
  • Brett Guthrie, Kentucky
  • Pete Olson, Texas
  • David McKinley, West Virginia
  • Cory Gardner, Colorado
  • Mike Pompeo, Kansas
  • Adam Kinzinger, Illinois
  • Morgan Griffith, Virginia
  • Henry Waxman, California, Ranking Member
  • John Dingell, Michigan
  • Ed Markey, Massachusetts
  • Edolphus Towns, New York
  • Frank Pallone, New Jersey
  • Bobby Rush, Illinois
  • Anna Eshoo, California
  • Eliot Engel, New York
  • Gene Green, Texas
  • Diana DeGette, Colorado
  • Lois Capps, California
  • Michael F. Doyle, Pennsylvania
  • Jan Schakowsky, Illinois
  • Charlie Gonzalez, Texas
  • Jay Inslee, Washington
  • Tammy Baldwin, Wisconsin
  • Mike Ross, Arkansas
  • Anthony Weiner, New York
  • Jim Matheson, Utah
  • G. K. Butterfield, North Carolina
  • John Barrow, Georgia
  • Doris Matsui, California
  • Vacancy

APPROPRIATIONS

Majority Minority
  • Hal Rogers, Kentucky, Chairman
  • C.W. Bill Young, Florida
  • Jerry Lewis, California
  • Frank Wolf, Virginia
  • Jack Kingston, Georgia
  • Rodney Frelinghuysen, New Jersey
  • Tom Latham, Iowa
  • Robert Aderholt, Alabama
  • Jo Ann Emerson, Missouri
  • Kay Granger, Texas
  • Mike Simpson, Idaho
  • John Culberson, Texas
  • Ander Crenshaw, Florida
  • Denny Rehberg, Montana
  • John Carter, Texas
  • Rodney Alexander, Louisiana
  • Ken Calvert, California
  • Jo Bonner, Alabama
  • Steve LaTourette, Ohio
  • Tom Cole, Oklahoma
  • Jeff Flake, Arizona
  • Mario Diaz-Balart, Florida
  • Charlie Dent, Pennsylvania
  • Steve Austria, Ohio
  • Cynthia Lummis, Wyoming
  • Tom Graves, Georgia
  • Kevin Yoder, Kansas
  • Steve Womack, Arkansas
  • Alan Nunnelee, Mississippi
  • Norman D. Dicks, Washington, Ranking Member
  • Marcy Kaptur, Ohio
  • Pete Visclosky, Indiana
  • Nita Lowey, New York
  • José Serrano, New York
  • Rosa DeLauro, Connecticut
  • Jim Moran, Virginia
  • John Olver, Massachusetts
  • Ed Pastor, Arizona
  • David Price, North Carolina
  • Maurice Hinchey, New York
  • Lucille Roybal-Allard, California
  • Sam Farr, California
  • Jesse Jackson, Jr., Illinois
  • Chaka Fattah, Pennsylvania
  • Steve Rothman, New Jersey
  • Sanford Bishop, Georgia
  • Barbara Lee, California
  • Adam Schiff, California
  • Mike Honda, California
  • Betty McCollum, Minnesota

SENATE

HELP COMMITTEE

Majority Minority
  • Daniel Inouye, Hawaii, Chairman
  • Patrick Leahy, Vermont
  • Tom Harkin, Iowa
  • Barbara Mikulski, Maryland
  • Herb Kohl, Wisconsin
  • Patty Murray, Washington
  • Dianne Feinstein, California
  • Dick Durbin, Illinois
  • Tim Johnson, South Dakota
  • Mary Landrieu, Louisiana
  • Jack Reed, Rhode Island
  • Frank Lautenberg, New Jersey
  • Ben Nelson, Nebraska
  • Mark Pryor, Arkansas
  • Jon Tester, Montana
  • Sherrod Brown, Ohio
  • Thad Cochran, Mississippi, Vice Chairman
  • Mitch McConnell, Kentucky
  • Richard Shelby, Alabama
  • Kay Bailey Hutchison, Texas
  • Lamar Alexander, Tennessee
  • Susan Collins, Maine
  • Lisa Murkowski, Alaska
  • Lindsey Graham, South Carolina
  • Mark Kirk, Illinois
  • Dan Coats, Indiana
  • Roy Blunt, Missouri
  • Jerry Moran, Kansas
  • John Hoeven, North Dakota
  • Ron Johnson, Wisconsin

APPROPRIATIONS

Majority Minority
  • Daniel Inouye, Hawaii, Chairman
  • Patrick Leahy, Vermont
  • Tom Harkin, Iowa
  • Barbara Mikulski, Maryland
  • Herb Kohl, Wisconsin
  • Patty Murray, Washington
  • Dianne Feinstein, California
  • Dick Durbin, Illinois
  • Tim Johnson, South Dakota
  • Mary Landrieu, Louisiana
  • Jack Reed, Rhode Island
  • Frank Lautenberg, New Jersey
  • Ben Nelson, Nebraska
  • Mark Pryor, Arkansas
  • Jon Tester, Montana
  • Sherrod Brown, Ohio
  • Thad Cochran, Mississippi, Vice Chairman
  • Mitch McConnell, Kentucky
  • Richard Shelby, Alabama
  • Kay Bailey Hutchison, Texas
  • Lamar Alexander, Tennessee
  • Susan Collins, Maine
  • Lisa Murkowski, Alaska
  • Lindsey Graham, South Carolina
  • Mark Kirk, Illinois
  • Dan Coats, Indiana
  • Roy Blunt, Missouri
  • Jerry Moran, Kansas
  • John Hoeven, North Dakota
  • Ron Johnson, Wisconsin
Comments (0)
Categories : SMA Treatment Acceleration Act

URGENT ACTION REQUESTED: RALPH HALL (R-TX-4th)

Posted: September 8th, 2010 | By: Staff | No Comments
Wednesday, September 8th, 2010

Attention to families living in Congressman Ralph Hall’s district (Texas’ 4th district): we need your help, and as soon as possible.

If you or someone you know lives in Congressman Hall’s district, please contact Caroline Gibson immediately: carolinegibson@fightsma.com or 804-515-0080. We need Mr. Hall to reach out to other Republicans on committee in support of the SMA Treatment Acceleration Act. This is an important and urgent request!

Thank you in advance for your help. We are nearing the finish line!

Comments (0)
Categories : SMA Treatment Acceleration Act

Has Your Family Had a District Visit?

Posted: September 7th, 2010 | By: Staff | No Comments
Tuesday, September 7th, 2010

SMA families and friends across the country have been hard at work during August recess on behalf of the SMA Treatment Acceleration Act (HR 2149, S 1158). Members of Congress have heard from YOU how important this legislation is, via emails, phone calls, letters, and district visits.

Did your family meet with your Congressman during August recess? We want to hear from you! Please send us recaps and pictures from meetings with your Member of Congress.

Keep up all your hard work. We’ve made great strides this Congress and will continue to work hard until we see this bill become law. Continue to follow-up with your Congressman or Senators’ offices as we turn the final corner for our bill.

Questions? Feel free to call or email Caroline Gibson, Public Affairs Coordinator, at anytime: carolinegibson@fightsma.com, 804-515-0080.

Comments (0)
Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends

August Targeted Grassroots Efforts

Posted: August 3rd, 2010 | By: Staff | No Comments
Tuesday, August 3rd, 2010

We need your help! If you see your Congressman’s name on this list, please contact Caroline Gibson (carolinegibson@fightsma.com), FightSMA’s Public Affairs Coordinator, immediately for information on how you can reach out to your Members who sit on the Energy & Commerce committee, who can help us pass the SMA Treatment Acceleration Act:

  • Edward Markey (MA-7th)
  • Rich Boucher (VA-9th)
  • Bart Gordon (TN-6th)
  • Anna Eshoo (CA-14th)
  • Eliot Engel (NY-17th)
  • Gene Green (TX-29th)
  • Lois Capps (CA-23rd)
  • Tammy Baldwin (WI-2nd)
  • G.K. Butterfield (NC-1st)
  • Charlie Melancon (LA-3rd)
  • John Barrow (GA-12th)
  • Doris Matsui (CA-5th)
  • Donna Christensen (VI)
  • Kathy Castor (FL-11th)
  • Ralph Hall (TX-4th)
  • Fred Upton (MI-6th)
  • Joseph Pitts (PA-16th)
  • Tim Murphy (PA-18th)

In case you missed it, check out the previous post: “August Grassroots Update.”

Comments (0)
Categories : SMA Treatment Acceleration Act

SMA Treatment Acceleration Act – August Grassroots Update

Posted: August 3rd, 2010 | By: Staff | No Comments
Tuesday, August 3rd, 2010

To all of our Friends in the Fight:

It’s hard to believe that the summer months are quickly coming to a close. Many of you were just with us in Washington, April 27th for our Annual Conference, The Good Fight! We hope the summer has been fun, relaxing and restful for you all.

As we continue our hard work on the SMA Treatment Acceleration Act (H.R.2149, S.1158) and enter the month of August, we need your help. Elected officials in Washington represent our interests. We want to see a treatment and cure for spinal muscular atrophy (SMA). We need this final push, from August going forward, for Congress to pass OUR bill!

Rebecca and Alex with Bridgette DeHart, aide to Congresswoman Yvette ClarkeEvery August, your Senators and Members of Congress head home for the district work period: a time to attend local events and interact with their you, constituents. This is a wonderful opportunity to see your Congressional representatives and ask for their help in passing the SMA Treatment Acceleration Act.

With November and elections just around the corner, time is of the essence. There are very few legislative days before the current Congress comes to a close at the end of this year.

Some of your representatives will be hosting “town hall” events or open houses where they welcome constituents – like you – to come and voice their top concerns. If you would be interested in attending one of these town halls to make your voice heard, you can call their district offices and ask if they plan on hosting a town hall or similar event. If not, find out if they will be attending local events where you might be able to speak with them: a festival, 5k race, opening of a community center, etc. You can even ask the district scheduler about making a specific appointment to see your member and tell your family’s story.

Remember: these Members of Congress are hired by YOU, the voter. They need to get face time with their constituents before Election Day in November. This is a wonderful opportunity to voice your opinion and support of the SMA Treatment Acceleration Act. They need to hear from you!

Once you’ve found an opportunity to meet your representative, what do you say?

  • If your member is not a cosponsor, ask them to cosponsor the bill. Make it personal (i.e. tell your family’s SMA story/connection) and make sure to mention the name and number of the bill. (H.R.2149 in the House, S.1158 in the Senate).
  • If your member IS a cosponsor of the bill, be sure to say “thank you!” Then, ask them to contact the Energy and Commerce Committee and let the committee know that passing the SMA Treatment Acceleration Act this year is one of their top priorities.

If you would like further talking points, or any question answered before meeting with your Member, FightSMA is here to help. Feel free to call Caroline Gibson anytime at 804-515-0080, or just send her an email at carolinegibson@fightsma.com. Caroline is here to to help you make this urgent and critical outreach.

Thank you all for your incredible hard work and dedication to seeing this bill through. We are a mighty army. United, we can and will see our dream come true: passage of The SMA Treatment Acceleration Act.

Yours in the fight,
FightSMA

In case you missed it, check out the follow-up post “August Targeted Grassroots Efforts.“

Comments (0)
Categories : SMA Treatment Acceleration Act
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