2009 August | Spinal Muscular Atrophy

Archive for August 2009

Dates announced for FightSMA’s 2010 Annual Conference

Posted: August 25th, 2009 | By: Staff | No Comments

Tuesday, August 25th, 2009

FightSMA is proud to announce the dates of the 2010 Annual Conference: The Good Fight. The Researchers Conference will be held April 25-26 and will gather select researchers and scientists in an intimate setting to discuss the most recent research and clinical trials through presentations and open dialogue. The Families and Friends Conference will be held April 26-28 and will include a lay-friendly science briefing with Q&A, “Thriving with SMA” panel discussion, one-on-one consultations with panelists, and visits to Capitol Hill.

More information will be posted as it is available on the conference’s webpage: www.fightsma.org/index.php?annual_meeting_2010. For more information about past FightSMA conferences or about spinal muscular atrophy (SMA), visit www.FightSMA.org.

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Categories : FightSMA News, Spinal Muscular Atrophy Events

Fighting Back Podcast #21 – A Room Full of Fighter Moms (Martha Slay)

Posted: August 20th, 2009 | By: Staff | No Comments

Thursday, August 20th, 2009

fighting-back-21-090820.mp3
People frequently ask, “What is a Fighter Mom?” Fight SMA president and Fighter Mom founder Martha Slay recently spoke with an entire room full of them, at the Rhett Syndrome Foundation’s 25th Annual Conference in Northern Virginia. She discussed the values of Fighter Moms and how to be a more effective one. In this episode of Fighting Back Podcast, we bring you the audio from her keynote address.

To listen to this episode, you can use the Flash mp3 player above, load the Fighting Back Podcast Feed into your favorite feed reader, subscribe via iTunes or other podcast directories, or simply use the download link above to load the file onto your computer. If you have feedback, a comment or question, or are interested in having Fighting Back tell your story, please contact page! You can also leave a message in the form of a comment on this blog as well.

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Categories : FighterMom Disease Advocacy News, Podcasts

Thank You Co-Sponsors of the SMA Treatment Acceleration Act

Posted: August 12th, 2009 | By: Staff | No Comments

Wednesday, August 12th, 2009

Horton Family visits Senator Roger Wicker

Dee Horton and daughter Evie met with Senator Roger Wicker (R-MS) to thank him for cosponsoring the SMA Treatment Acceleration Act (S 1158).

FightSMA would like to thank all of the U.S. Representatives and Senators that have signed on to support the SMA Treatment Acceleration Act. Your leadership and dedication to finding a cure for spinal muscular atrophy (SMA) is admirable and appreciated by the thousands of people whose everyday lives are affected by this cruel disease.

As of August 12, 2009, the following Members have signed on as cosponsors of the SMA Treatment Acceleration Act (HR 2149, S 1158):

House of Representatives

Sponsor: Rep. Patrick Kennedy (RI)
Rep. Earl Blumenauer (OR)
Rep. Eric Cantor (VA)
Rep. Lois Capps (CA)
Rep. Yvette D. Clarke (NY)
Rep. Steve Driehaus (OH)
Rep. John Fleming (LA)
Rep. Bob Goodlatte (VA)
Rep. John J. Hall (NY)
Rep. Gregg Harper (MS)
Rep. Stephanie Herseth Sandlin (SD)
Rep. Brian Higgins (NY)
Rep. James A. Himes (CT)
Rep. Steve Israel (NY)
Rep. James R. Langevin (RI)
Rep. Carolyn B. Maloney (NY)

Rep. Eric J. J. Massa (NY)
Rep. Thaddeus G. McCotter (MI)
Rep. Cathy McMorris Rodgers (WA)
Rep. Mike McIntyre (NC)
Rep. Gregory W. Meeks (NY)
Rep. Adam H. Putnam (FL)
Rep. Harold Rogers (KY)
Rep. Joe Sestak (PA)
Rep. Bennie G. Thompson (MS)
Rep. Patrick J. Tiberi (OH)
Rep. Edolphus Towns (NY)
Rep. Joe Wilson (SC)
Rep. Robert J.Wittman (VA)
Rep. Frank R. Wolf (VA)
Rep. David Wu (OR)
Rep. C.W. Bill Young (FL)

Senate

Sponsor: Sen. Debbie Stabenow (MI)
Sen. Sherrod Brown (OH)
Sen. John F. Kerry (MA)
Sen. Johnny Isakson (GA)
Sen. Patty Murray (WA)
Sen. Jack Reed (RI)
Sen. Bernard Sanders (VT)
Sen. Sheldon Whitehouse (RI)
Sen. Roger F. Wicker (MS)

Don’t see your Members’ name on here? Let them know that you support the SMA Treatment Acceleration Act and they should too! Here’s 5 Ways:

Write a letter to your Congressman and Senators expressing your support of the bill. Need help? Click here!
Call your Members of Congress to let them know you support the bill. If you need contact info, call or email Caroline Gibson (804-515-0080, carolinegibson@fightsma.com)
Schedule a meeting with your Members in their district office. Email Caroline Gibson for help (carolinegibson@fightsma.com) Traveling to DC? Make an appointment in their Capitol Hill offices!
On Twitter? In just 30 seconds, you can “tweet” your Members of Congress by “Tweeting for a Cure” at http://www.EndSMA.org/twitter
Sign the PetitionToCureSMA.com. Over 69,000 people (and counting) have already signed!

Thank you for all you are doing to fight SMA!

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Categories : General Information

Tweet for a Cure

Posted: August 12th, 2009 | By: Staff | No Comments

Wednesday, August 12th, 2009

As you know, efforts are majorly under way to support the SMA Treatment Acceleration Act (HR 2149, S 1158). Thank you all for the tremendous amount of hard work and dedication you have shown already to getting this bill passed!

Over August recess, there is a full court press to get more cosponsors and we are initiating an aggressive grassroots campaign. The newest grassroots strategy is “Tweet for a Cure” (thanks to the Gwendolyn Strong Foundation). Tweet for a Cure is an example of SMA for SMA (Social Media Advocacy for Spinal Muscular Atrophy). Let’s use this powerful tool to our advantage!

The Strongs have made this so easy for Twitter users out there. From GwendolynStrong.com:

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. Four simple steps. 1-2-3-4…

Here’s how:

Go to EndSMA.org/twitter

Enter your ZIP code

Enter your Twitter username and password

Click “Tweet”

That’s it!

Make sure to let your friends know about how easy it was to use EndSMA.org/twitter to sound off to your Congresspeople by Tweeting about it, blogging about it, posting it to your Facebook status, emailing it, etc.

Special thanks must go to our dear friend Josh Lippiner for helping us on this project. It wouldn’t be possible without him. Thanks Josh!

After you’ve done that, be sure to pass along the link to Tweet for a Cure (http://endsma.org/twitter) to your friends, family, and coworkers that are on Twitter!

If you have any questions at all about Tweet for a Cure, please feel free to ask!

Tweet on for SMA!

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Categories : SMA Treatment Acceleration Act

Update: SMA Education Event for Families – Remote Access Available

Posted: August 11th, 2009 | By: Staff | No Comments

Tuesday, August 11th, 2009

On August 15th, the University of Wisconsin Pediatric Pulmonary Center is sponsoring a free workshop open to parents, family members, and caregivers of children with spinal muscular atrophy (SMA). For more information, click here to view the original blog post.

But what about families who cannot travel to the workshop? Justin Kuester, a driving force behind the workshop, has been working with Dr. Schroth’s team to see if webconference capabilities could be secured to open up the SMA Education Day to people who cannot attend in person. And, he has been successful!

To access the webconference, visit http://wisc.na4.acrobat.com/sma/ at the time of the workshop. Justin suggests that interested families test the URL early to ensure that their browsers are able to connect and install any plugins as necessary.

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Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Science and Research