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Posts tagged with: Sma Treatment Acceleration Act

Continuing the SMA Charge on Capitol Hill

April 27, 2011 by Bill Strong
Get ready -- a NEW SMA bill is on it's way and we will need YOUR help.

We've always believed that having a consistent, coordinated SMA voice on Capitol Hill is a key component to continuing to move SMA awareness, funding, research, and advocacy forward at the highest level.We've been big supporters...

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Meeting Congresswoman Capps

February 01, 2011 by Victoria Strong

Today we met with Congresswoman Lois Capps at her Santa Barbara office. We have met with, emailed, and spoken with her Health Aides many times before, but we have never actually met Representative Capps. The first thing you should know is that she is really super nice. (I found myself wanting...

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NPR - California Report - “A Family Fights Spinal Muscular Atrophy”

October 02, 2010 by Bill Strong
NPR - California Report

This is the segment that aired statewide in California on NPR's California Report on Gwendolyn, us, spinal muscular atrophy (SMA), the Gwendolyn Strong Foundation, our petition, and the SMA Treatment Acceleration Act. Thank you Diane for capturing the reality of SMA and creating such an incredible...

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Gwendolyn and SMA on NPR!

September 30, 2010 by Victoria Strong

We are beyond excited! NPR or National Public Radio's highly respectedCalifornia Report is airing an interview about Gwendolyn and spinal muscular atrophy (SMA) this Friday and Saturday! The segment will be aired statewide on Friday at 4:30pm PT on over 30 stations and again inSanta Barbara and...

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California Supports SMA Awareness

August 29, 2010 by Victoria Strong

We've been so busy working on the "$200K for SMA" campaign that we completely forgot to update about the other wonderful things that have been happening with Spinal Muscular Atrophy awareness and advocacy this month.

The State of California Declares August SMA Awareness Month --> This took a lot of...

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Los Angeles Friends: PLEASE Contact Rep. Waxman ASAP

April 23, 2010 by Victoria Strong
It is extremely important that everyone call or email their representatives asking them to cosponsor the SMA Treatment Acceleration Act. but today it is especially critical that our Los Angeles friends tell Representative Henry Waxman that his support is needed.

Representative Henry Waxman is key...

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Call To Action: Help Pass SMA Bill

April 20, 2010 by Victoria Strong
Calling all SMA supporters! We need your help!

As you know the SMA Treatment Acceleration Act is making its way through Congress. While the last few months have been focused on health care reform, our little SMA bill has been circling the desks of lots of Senators and Representatives. The good news...

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PetitionToCureSMA.com Efforts Working

November 22, 2009 by Victoria Strong
It is working! With collective efforts, PetitionToCureSMA.com is growing -- and quickly. In less than a week it has blown past 77,000 supporters! This is awesome! And, as this petition grows it is not only sending a strong message to Congress, it is raising awareness of SMA. And knowledge brings...
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I Support SMA Research Because Babies Matter!

November 16, 2009 by Victoria Strong
Okay guys, we need help! And NOW! The SMA Treatment Acceleration Act has a window of opportunity in the House of Representatives now that the ginormous health reform bill is no longer at the forefront. But, it is a small window and so we need to up the ante, spread the word, get our mojo rolling...
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Exciting Things…

September 04, 2009 by Victoria Strong
We have so many exciting things going on right now and they are joyfully keeping us busy...
  1. PetitionToCureSMA.com just passed 70,000 signers! Can I get a woot, woot! So, so excited about this. And our Join The Fight! video is nearing 5,000 views and our first petition video passed 11,000 views! You...
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"Tweet For A Cure" Tops 2,000 Tweets To Date, Reaches 1.4

August 21, 2009 by Bill Strong
In a little over two weeks since we launched "Tweet For A Cure", over 2,000 people have Tweeted their Congresspeople about the importance of the SMA Treatment Acceleration Act of 2009 and through those 2,000 people our SMA awareness message has reached nearly 1.4 Million Twitter followers - yes,...
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Tweet For A Cure: 4 simple steps

August 10, 2009 by Bill Strong
Today, we launched a new EXTREMELY simple way for you to let your Congresspeople know that the "SMA Treatment Act of 2009" is legislation that is important to pay attention to. "Tweet For A Cure" allows you to automatically Tweet a message to your Representatives and friends based on your ZIP code....
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SMA Awareness Month; New Petition Video

August 02, 2009 by Victoria Strong
August is national SMA Awareness month and in honor of all of those who have lost their fight and the thousands of children still fighting SMA, we hope this video will help to further SMA awareness. We truly believe that through increased awareness of SMA a treatment and cure become infinitely more...
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Call To Action: Write Your Congresspeople To Help END SMA!

July 26, 2009 by Bill Strong

Even if you've already written your Congresspeople

about the "SMA Treatment Acceleration Act",

we need you to write them one more time

to help get this legislation passed!

Earlier this year, the "SMA Treatment Acceleration Act of 2009" was reintroduced in both the United States Senate and United States...

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SMA Bill Re-Introduced in U.S. Senate

May 22, 2009 by Bill Strong
Great news to start the holiday weekend!

Today, the "SMA Treatment Acceleration Act of 2009", or S. 1158, was introduced in the U.S. Senate by . It joins the
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SMA Bill Re-Introduced in U.S. House of Representatives

May 05, 2009 by Victoria Strong
Last week, the SMA Treatment Acceleration Act of 2009, or H.R. 2149, was introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). This new version builds on the momentum created by the success of the last SMA Treatment Acceleration...
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PetitionToCureSMA.com update, new goal

January 31, 2009 by Bill Strong

If you've already signed in support of our petition to end SMA, PetitionToCureSMA.com, you've most likely received the update below that was sent this week by Care2 on our behalf. But, we thought we'd post it here to make sure everyone was updated on the progress of the petition and legislation,...

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New key House E&C committee appointments; we need your help!!!

December 11, 2008 by Bill Strong
If you live in or know someone who lives in Florida, Maryland, Connecticut, Ohio, California, Iowa, or the U.S. Virgin Islands, please read on; we need your help!!!

Yesterday, Speaker Nancy Pelosi announced the new appointments to the House of Representatives Energy & Commerce Committee. This...
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Meeting With Congressman Waxman's Staff

December 03, 2008 by Bill Strong
We had a very productive meeting about The SMA Treatment Acceleration Act with Congressman Henry Waxman's Regional Director, Lisa Pinto, yesterday. Unfortunately, Mr. Waxman had to head back to Washington early, so he was unable to meet with us, but nonetheless we left with a really positive...
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This is what…

December 01, 2008 by Bill Strong

26,000+ PetitionToCureSMA.com signatures looks like printed out on
500+ pages.

Victoria, Gwendolyn, and I will be taking this with us to our meeting
in Los Angeles tomorrow with Congressman Henry Waxman. Congressman
Waxman has been kind enough to offer us an invitation to meet and we
are honored to...

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