Our friends at Stop SMA in Mississippi are preparing for their fundraiser, Laugh Away SMA, to be held at the end of this week, August 6 at 7:30PM. The event will bring two nationally known comics, Ralph Harris and Henry Cho, to Jackson, Mississippi and funds raised will support research for a cure for spinal muscular atrophy (SMA). Jeff Horton and his daughter Evie, the reason the Hortons started Stop SMA, appeared on their local NBC news to tell the community about the event and the disease. Check out the video below.

For more information about the event and how to buy tickets, visit the Laugh Away SMA website.

Tags: fundraiser, Mississippi, Stop SMA, video

On July 21, 2010, the U.S. Senate Committee on Health, Education, Labor and Pensions (HELP) heard testimony from panelists discussing Rare and Neglected Pediatric Diseases. One of these diseases was spinal muscular atrophy (SMA).

Two of the panelists were Dr. Alan Guttmacher and Mr. John F. Crowley.

Dr. Guttmacher, who is the Acting Director at the National Institute of Child Health and Human Development (NICHD), spoke on the importance of SMA and SMA research to NIH and its officials.

Mr. Crowley, CEO and Chairman of Amicus Therapeutics, spoke about patient advocacy, and the admirable work and advocacy that FightSMA has exhibited over the years.

Click here to read the transcript of Dr. Guttmacher’s testimony and here for the transcript of Mr. Crowley’s testimony. For more information about the hearing, including the testimony of other panelists and video of the hearing, click here.

Tags: National Institute of Child Health and Human Development, National Institutes of Health, Rare Disease, research, spinal muscular atrophy, U.S. Senate, video

Thank you to everyone who came out for 4th Annual Rubber Duck Race, organized by Patrick’s Buddies/FightSMA New Jersey, Sunday, May 23, 2010 in Westfield, New Jersey’s Mindowaskin Park. The crowds turned out for an awesome race and helped raise funds to support the search for a treatment and cure for Spinal Muscular Atrophy (SMA), a deadly crippler and the number-one inherited genetic cause of infant death.

Special thanks to the members of the Rutgers Scarlet Knights football team who showed their support for the fight against SMA and to the volunteers who made the event possible.

Pictured above: Patrick with Eric LaGrande and Mohammed Sanu
from the Rutgers Scarlet Knights

Check out more pictures and video from the Duck Race on the Westerfield Patch’s website.

Tags: fightsma, fundraiser, new jersey, spinal muscular atrophy, video

Dr. Nicholas Boulis, a recipient of FightSMA funding and past presenter at FightSMA Annual Conferences (2006, 2007, 2008, and 2009), is currently part of a study examining the delivery of cell-based therapeutics to ALS patients. Dr. Boulis developed the surgical device that provides the stability needed for a needle to deliver therapeutic agents into the spinal cord.

Read the CNN article and watch the video by clicking here.

Tags: ALS, Nicholas Boulis, research, spinal muscular atrophy, stem cells, surgery, video

If I had my way, there’d be a swimming pool in everybody’s backyard. - Dr. Bob Leshner, M.D.

In this preview of the new FightSMA / Metro Productions sponsored webisodes, “Fighting Back,” FightSMA President Martha Slay interviews Dr. Alex Mackenzie (Children’s Hospital of Eastern Ontario) and Dr. Robert Leshner (Children’s National Medical Center), asking a few questions that are on the minds of spinal muscular atrophy (SMA) parents everywhere.

Click the above video to watch the interview, and keep logging on to FightSMA.org for more interviews, video content, and more!

Thank you to Metro Productions, our partners in this fight, for their generous gifts of time and expertise in the pro bono production of these videos.

Tags: Alex MacKenzie, Bob Leshner, diagnosis, exercise, Martha Slay, spinal muscular atrophy, video

Attention SMA Families, Kids and Friends!

We want to share your story - starring YOU! FightSMA has a special campaign in early 2010 and we need your help. Send us videos of your family and children breaking barriers: from doing the unexpected (playing floor hockey, skiing, etc), to sharing a cool story about your family, to giving advice to other families, helping them make their lives just a little easier. In 2010, it’s all about you.

We’ll be picking our favorite videos to be showcased and to receive an extra cool prize. More details to come soon!

Please send your video submissions via email or hard copy, along with the patient’s name, age, SMA type, and a fun fact. Here’s how:

Electronically
carolinegibson@fightsma.com
Send us a link to the YouTube or other video hosting site, or via a filesharing website like YouSendIt

Hard Copy
From Our Family To Yours
Attn: Caroline Gibson
FightSMA
1807 Libbie Avenue, Suite 104
Richmond, VA 23226

Questions? Feel free to call or email Caroline anytime. 804-515-0080 or carolinegibson@fightsma.com.

By submitting a video for this campaign, you authorize FightSMA/Andrew’s Buddies to use the submitted footage in its original or edited form in any media. You also certify that to the best of your knowledge, all materials used in your video are your own or are materials for which you have obtained any necessary permissions. You further acknowledge that you submit the video freely and without expectation of compensation for any uses made of the submitted footage.

Tags: families, fightsma, living with SMA, spinal muscular atrophy, video

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.

Tags: fundraising, spinal muscular atrophy, video

The 2009 FightSMA Annual Conference featured a number of firsts, including the first-ever webcast of the event. Now, the video from that webcast is available for online viewing and download! You can watch it on the Conference 2009 page here at FightSMA. Just follow this link: FightSMA Annual Conference 2009

Tags: conference 2009, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA, video, webcast

The Virginian-Pilot newspaper printed a story Sunday about the family leading FightSMA’s chapter in Virginia Beach, Virginia. The article touched on aspects that many families affected by spinal muscular atrophy (SMA) face: the shock of the diagnosis, the struggle to fight the disease, and the loss of a child. But, the article also recognized the promise and hope brought about by research being done around the country and the need for the fight to continue.

The Saville Family openly speaks about their experience of learning their daughter Morgan had SMA, of raising awareness and funding, of seeking treatment, and of her death in 2005. They also discuss how their efforts to defeat SMA have been renewed following their new baby’s birth, diagnosis, and enrollment in Dr. Kathy Swoboda’s pre-symptomatic study, funded in part by FightSMA. Stacy Saville and her son, accompanied by Virginian-Pilot photographer Genevieve Ross, attended the FightSMA Annual Conference in April and traveled to Capitol Hill to advocate for the SMA Treatment Acceleration Act.

To read the full article, click here. Below is a lovely slide show that the paper also put together.

Tags: conference 2009, fightsma, FightSMA Annual Conference, Kathy Swoboda, presymptomatic, SMA treatment acceleration act, spinal muscular atrophy, video, Virginia

FightSMA has produced a slideshow of photos from the 2009 FightSMA Annual Families and Friends Conference: The Good Fight held April 27-28 in Washington, D.C.  Please check out the images below.  To read more about the event, please visit the 2009 Annual Conference page!

Thank you to our attendees, corporate sponsors, Thriving with SMA panelists, and photographer Ralph Alswang.

Tags: conference 2009, fightsma, FightSMA Annual Conference, spinal muscular atrophy, Thriving with SMA, video