Mississippi Governor Haley Barbour has declared the month of August as Spinal Muscular Atrophy Awareness Month in the State of Mississippi. The SMA community would like to thank Governor Barbour for his leadership, support, and commitment to finding a cure for SMA, the number-one genetic killer of children under the age of two.

Click here to read Governor Barbour’s proclamation.

Greetings SMA families, researchers and friends:

First and foremost, thank you for all you have done to help us increase awareness and attention towards our efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158).

Thanks to your efforts, 27 Members of the House of Representatives and 6 Senators have now signed on to the SMA legislation. In order to keep this bill moving through the legislative process, we need to continue to grow the number of cosponsors of the bill. Our goal continues to be to encourage previous cosponsors from the 110th Congress to sign on to the bill again, while at the same time adding new members to the ranks. A list of our current cosponsors, as well as our target House and Senate cosponsors from the 110th Congress, are provided below. More than ever, we need your help! PLEASE contact your Members of Congress to ask them to cosponsor the SMA Treatment Acceleration Act.

Additionally, the August recess, which begins Monday, August 3rd for the House and Monday, August 10th for the Senate and goes until Labor Day, Monday, September 7th, is an ideal time for families to arrange meetings with their Representatives and Senators in their district offices. District meetings offer a unique opportunity to focus Members’ attention on the SMA bill while they are away from the constant demands of their work on healthcare reform and other issues in Washington. PLEASE contact your Member of Congress and Senators’ district offices and request to meet with them over the August recess.

As most of you are aware, the SMA Treatment Acceleration Act of 2009, introduced in the U.S. House of Representatives by Congressmen Patrick Kennedy (RI) and Eric Cantor (VA) and in the U.S. Senate by Senators Debbie Stabenow (MI) and Johnny Isakson (GA), provides federal support to complement the substantial private funding that is being invested to find a treatment for SMA. Passage of this landmark legislation will enable scientific investigators to expedite national clinical trials and demonstrate that potential treatments are safe and effective for SMA patients.

THANK YOU AGAIN for your help for all those with SMA!

Sincerely,

*****************

NOTE: For more information on the “The SMA Treatment Acceleration Act” please contact any one of our Government Affairs staff:

Spencer Perlman, Families of SMA, spencer@fsma.org
Caroline Gibson, FightSMA, carolinegibson@fightsma.com
Annie Kennedy, MDA, akennedy@mdausa.org
Laura Lay, SMA Foundation, llay@wswdc.com

111th Congress Co-Sponsors

House of Representatives

Senate

To download this update, click here.

Earlier this year, the community of Mechanicsville, Virginia came together to celebrate nine successful years of raising funds for the fight against spinal muscular atrophy (SMA), led by the hard work and determination of Carice Smith. After getting over the initial shock of her son Andrew being diagnosed with SMA, Carice has said that she knew she had to take a pro-active stand. This stand took the form of the “Strike Out SMA Bowlathon” which was held annually, missing only one year due to illness. For the 10th year, family and friends decided to throw a party to honor the work of Carice, Andrew, and all their supporters - and to raise money to support SMA research.

Check out the slideshow of pictures from the party below, and to see the list of generous corporate sponsors and learn more background information about the event, click here.

Kenny Wallace of Midlothian, Virginia, is fighting Spinal Muscular Atrophy (SMA) every way he knows how. Wallace is the father to Taylor, age 4, who is affected by SMA, the number-one genetic killer of children under the age of two. In addition to raising funds in his community for SMA research, Wallace has taken a very personal approach to raising awareness about the disease. Wallace recently got the FightSMA logo tattooed on his arm — a permanent declaration of his commitment to eradicating this terrible disease.

Jeff Horton is a Dad.  But he’s not just any Dad — he’s a Fighter Dad.  After his daughter, Evie, was diagnosed with Spinal Muscular Atrophy (SMA), Jeff became proactive in getting the word out about the disease.  SMA, as you might know, is the number-one inherited killer of children under the age of two.

In April 2009, Jeff attended his first FightSMA Annual Conference in Washington, DC, and participated in the annual Capitol Hill Day.  You can see him to the right with Congressman Gregg Harper of Jeff’s home state of Mississippi.  In preparation, Jeff did some work “in the field” back home in order to gain the support of his Members of Congress.  He had one goal: to get all of his Members to sign on as cosponsors for the SMA Treatment Acceleration Act.

Jeff agreed to share his experience with FightSMA and our blog readers.

…Click here to read more.

SMA Education Day: Clinical Updates for Parents of Children with SMA

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). Presenters Mary Schroth, MD; Karen Patterson, PT; Krista Kienitz, OT; and Mary Marcus, MS, RD, CSP will discuss topics including “Pulmonary Issues in SMA,” “Physical Therapy/Occupational Therapy - What’s Best for Your Child,” and “Nutrition Issues in SMA.” Continental breakfast and lunch included.

Time: August 15, 2009 from 8:30am to 1:30pm

Location: University of Wisconsin Hospital and Clinics, Room G5/152

Registration Deadline: July 31, 2009

To register for the workshop, email Kate Kowalski, MSSW, Administrator and Family Involvement Faculty at kmkowalski@pediatrics.wisc.edu with the following information:

Attendee’s Name(s)
Child’s Name
Address
Home Phone Number
Cell Phone Number
Email Address

 FB 20 [17:49m]: Play Now | Play in Popup | Download

Genetic testing can be an incredible tool, but it can be difficult to understand how it works and what to expect.  We’re honored to have as our guest on the latest episode of Fighting Back Podcast, Dr. Joann Bodurtha, a geneticist from Virginia Commonwealth University Medical Center in Richmond, Virginia.  She explains how these tests can be important for parents and parents-to-be.

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.

This week, Fight SMA sent packets to 30 medical supply companies across the Central Virginia area.  The effort, called “The Thumb Drive”, hopes to raise money for spinal muscular atrophy research.  The below video was included in the packet, and was loaded onto a flash memory storage drive, aka a “thumb drive”.

To join the Thumb Drive, please donate using this card (pdf), or by clicking here.