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

APPROPRIATIONS

SENATE

HELP COMMITTEE

APPROPRIATIONS

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!

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.”

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!

Every 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.“