2008 August | Spinal Muscular Atrophy

Archive for August 2008

Virginia Family Asking for “Five Minutes”

Posted: August 27th, 2008 | By: Staff | No Comments

Wednesday, August 27th, 2008

Virginia Beach, Virginia’s Sawyer family is asking for five minutes … five minutes to help find a cure for SMA. The Sawyers and their five-year-old son, Sam, appeared on local television station WAVY recently to push for support of the SMA Treatment Acceleration Act. They’re asking for everyone to take just five minutes to write their congressional representative in support of the proposed legislation.

Here’s an excerpt of the story that appeared on the TV station’s website:

He used to be able to climb. Now he can’t stand. His chest muscles are also weak. His mom says getting a common cold could kill him.

“Anytime I hear a sniffle or a little cough, I’m running him to the doctor to make sure he doesn’t have pneumonia because a little bit of pneumonia could take his life,” said Terri Sawyer.

Many children with SMA don’t live to be as old as Samuel.

Researchers say they are close to finding a cure, but need money from the government to make it happen.

Congress is now considering The SMA acceleration act, and Sam’s family is asking everyone to take five minutes and write their congress members to ask for support.

You can read the entire story and watch the video that appeared on WAVY’s newscast by clicking here. To learn more about the SMA Treatment Acceleration Act, visit our legislative information page.

You can also signal your support of the SMA Treatment Acceleration Act by signing a petition that will be sent to lawmakers. If you haven’t signed on at the PetitionToCureSMA, please take a few minutes to do so. It is much appreciated!

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Categories : General Information, SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends

Congressman Patrick Kennedy Helps Swing Against SMA

Posted: August 13th, 2008 | By: Staff | No Comments

Wednesday, August 13th, 2008

Participants in a recent fundraiser in Cranston, Rhode Island fought against spinal muscular atrophy with golf clubs, and a big supporter from the U.S. Congress helped them.

Fight SMA’s Rhode Island chapter, Corinna’s Angels, organized the 5th Annual Swing Against SMA Golf Tournament. In attendance was Rhode Island Congressman Patrick Kennedy (pictured to the right with the Calise family – click the picture to see a larger version), who is a supporter of not only Fight SMA but is also a key sponsor of the SMA Treatment Acceleration Act.

“When Congressman Kennedy learned that he had a chance to champion our bill to help find a treatment or cure for SMA, and to help our children who fight this disease daily, Congressman Kennedy stepped up and accepted the invitation,” said tournament organizer Michelle Calise. “With continued support from our families and through the hard work and dedication of Congressman Kennedy, we look forward to the SMA Treatment Acceleration Act becoming law by the end of 2008, and granting us the funds we need to bring this deadly disease to its knees.”

We thank Congressman Kennedy for his participation in the event, and for his continued support!

Please help us and all of the SMA Community represented by Miracle for Madison, Families of SMA, Peyton’s Pals, SMA Angels, SMA Support, MDA and The SMA Foundation continue to build support for the SMA Treatment Acceleration Act. A list of our current sponsors is posted here. For more information on how you can personally become involved in the fight to defeat Spinal Muscular Atrophy and open doors for other neurodegenerative diseases like ALS (Lou Gehrig’s Disease), Alzheimer’s Disease and Parkinson’s Disease, please contact Caroline Gibson, Fight SMA Public Affairs Coordinator, by using our contact form.

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Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends

Spinal Muscular Atrophy Petition Organizers Aiming Higher

Posted: August 12th, 2008 | By: Staff | No Comments

Tuesday, August 12th, 2008

As of today, the Petition to Cure SMA has an amazing 14,000 signatures. But, the family behind the petition, The Strongs, aren’t done yet. Bill Strong says they’re aiming for more. The petition is designed to raise awareness of the SMA Treatment Acceleration Act, and the signatures will be delivered to U.S. Congress to show public support of the bill. If you haven’t signed the petition, please take the 30 seconds needed to add your name to the rapidly growing list!

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Categories : SMA Treatment Acceleration Act

Details from the Annual Meeting of the American Society of Gene Therapy

Posted: August 12th, 2008 | By: Staff | No Comments

Tuesday, August 12th, 2008

The American Society of Gene Therapy, or ASGT, has posted abstracts and session details from its recent 11th Annual Meeting. Fight SMA was one of five patient advocacy groups to present at the meeting. The president of the ASGT posted a letter on the organization’s website. Here’s an excerpt:

A final highlight was the outstanding evening symposium presented by a team of five Patient Advocacy Groups. ASGT would like to welcome the ALS Association, Families of SMA, Fight SMA, the Muscular Dystrophy Association, and the SMA Foundation and we hope that our meeting will be the catalyst for productive collaborations between our members and the clinicians and patients your fine groups are representing.

You can read session overviews here, and abstracts here.

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Categories : General Information, Spinal Muscular Atrophy Science and Research

Video: A Persistence of Vision

Posted: August 6th, 2008 | By: Staff | No Comments

Wednesday, August 6th, 2008

We were alerted today about a video on YouTube about a remarkable young man. George Cornelius is a University of Southern California film student, and according to his friends and professors he is producing outstanding work. He also happens to have SMA. The story in the video below was produced by the PBS program Across Indiana.