Greetings SMA families, researchers and friends:

We would like to extend our deepest thanks for your dedication and all you have done to help grow support for the SMA Treatment Acceleration Act (H.R. 3334/S. 2042). Thanks to your efforts, 83 Members of the House of Representatives and 21 Senators have signed on to the bill, a major milestone for the first-ever federal legislation authorizing SMA funding.

Our approach and goals for the rest of this year are to continue to push for consideration of the bill. Congress is likely to recess for the fall election season as early as this week, but, there is a possibility that a “lame duck” session will occur following the November elections and before the new Congress and President are sworn into office. If Congress does return for a lame duck session, it is possible that the SMA Treatment Acceleration Act could be considered. As part of an effort to create such an opportunity, our government relations team is in ongoing discussions with Congressional leadership and senior members of the House Energy and Commerce Committee on both sides of the aisle.

Regardless of the outcome of a lame duck session, we have made extraordinary progress over the past 12 months which positions us perfectly to reintroduce the bill at the start of the new Congress next January, continue to grow support, and work towards passage and enactment. Thank you again for your continued hard work as we make progress in securing support for our Act. As we continue our discussions with Congressional leaders in the coming months, we will provide additional updates as well as calls to action to seek your help in moving key decision makers in the House and Senate.

Sincerely,

Martha Slay, FightSMA

Kenneth Hobby, Families of SMA

Cynthia Joyce, SMA Foundation

NOTE: If you have any questions about the SMA Treatment Acceleration Act, please feel free to contact any one of our Government Affairs staff: Laura Breiteneicher of the SMA Foundation (laurab@wswdc.com / 202-589-0800), Spencer Perlman of Families of SMA (spencer@fsma.org / 202-333-5750), or Caroline Gibson of Fight SMA (carolinegibson@fightsma.com / 804-515-0080)

Our very own Martha Slay was given a very nice honor a couple of months back, and we were remiss in posting it here as a way of congratulating her!

Richmond radio station WMXB (Mix 103.7) named Fight SMA President Martha Slay as its “Extraordinary Woman of the Month” back in July.  The award honors women in the area who are doing great things, and we think Martha certainly personifies that description.  Here’s a look at her nomination letter, which was written by Fight SMA’s Caroline Gibson:

Martha Slay is my boss, the founder and president of Fight SMA . Fight SMA is a 501c3 non-profit organization dedicated to finding a cure for Spinal Muscular Atrophy (SMA), the number one inherited killer of babies under three. Martha and her husband Joe founded Fight SMA in 1991 after receiving the diagnosis of their son, Andrew. Back then, it was known as Andrew’s Buddies. Now, Fight SMA boasts 19 chapters in the US and Canada and is in development talks to found Fight SMA Australia. In addition, Martha also created the Fighter Mom program, a program for ANY mom fighting ANY childhood disease or disorder. Using what she’s learned from the successes (and failures) of Fight SMA , Martha created a community and manual for these spectacular mothers, and gives them the tools they need to go to battle for their kids.

Martha is truly an extraordinary woman. She goes above and beyond the call of duty. She is a Fighter Mom, an advocate, and a hero. She is THE Extraordinary Woman!

Congratulations to Martha, and to all of the winners of this great award!

The National Institutes of Health (NIH) announced that Dr. Elias Zerhouni will be stepping down as NIH’s Director at the end of October. In an email to members of NIH’s extramural community, Dr. Zerhouni said, “I have had the unparalleled privilege of leading one of the great institutions in history,” and he included that he was leaving “to explore new opportunities and to devote much of my attention to writing.” Dr. Zerhouni has held the position at NIH since May of 2002.

“During his tenure, Zerhouni worked to lower barriers between disciplines of science and encourage trans-NIH collaborations,” said NIH’s press release announcing his departure. It went on to say “Zerhouni also led a major reform of the translational and clinical research system in the United States.”

To read the NIH press release and learn about Dr. Zerhouni’s accomplishments, click here.

The National Institutes of Health “is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases.” It is composed of 27 Institutes and Centers, including The National Institute of Neurological Disorders and Stroke (NINDS) which established the SMA Project, “a model translational research program to accelerate the process of developing a safe and effective treatment for spinal muscular atrophy.”

Over the past several months, the Fight SMA team and SMArt Board have been hard at work planning a brand-new fall celebration. This revamped and more casual party will take the place of SMAsquerade, and it promises to be a highlight of the 2008 campaign. We are so excited to unveil “To Fight Life Through” to all of our longtime supporters and new friends to our cause.

Our dynamic SMArt Board is thrilled to announce that the 2008 fall celebration will be held November 15, 2008 at the stylish and beautiful BANK (1005 E. Main Street in Richmond, Va.) from 6:00-9:00pm. Tickets are $50 (tax-deductible) and valet parking is available. The party will be a dazzling evening of cocktails (including signature SMArtinis!), hors doeuvres, a jazz trio, and - most importantly - a celebration of YOU! After the party, continue to celebrate the night away at Bank, or make your way down to Shockoe’s many fabulous restaurants and bars!

We’re looking forward to celebrating with you on November 15th!

Click here to purchase tickets!

A petition created by an SMA family to show the U.S. Congress the support for the SMA Treatment Acceleration Act has hit a big milestone.  Yesterday, the Petition to Cure SMA broke 20,000 signatures.  The petition was created just two months ago by Bill and Victoria Strong.  Their daughter, Gwendolyn, has SMA Type 1.  She turns one year old next month.  Fight SMA has been supporting the petition and the efforts of the Strongs.  Here’s what Bill posted on the Fight SMA Group on Facebook:

With your help, we have attained this milestone and Congress is paying attention. In that short time, 18 new Representatives and 4 new Senators have officially signed on to consponsor the bipartisan SMA Treatment Acceleration Act. We are making real progress…

We started with just a whisper and our voice is growing strong, but we need Congress to hear us from the mountaintops! Please reach back out to your family, friends, friends of friends, and colleagues, and make sure that they and everyone in their household has signed the petition and ask that they do the same with their network. Each and every additional signature shows Congress that this little known disease has a powerful voice!

If you haven’t signed the petition, please click the banner below and add your name to the tens of thousands who have joined in the fight!

Freelance columnist Daniel J. Vance (pictured left) recently profiled architect Stu Soneson in his weekly column “Disabilities” which can be found in more than 200 newspapers around the United States. Stu Soneson has spinal muscular atrophy, the number-one genetic killer of children under the age of two.

From the article:

Soneson has spinal muscular atrophy, which a National Institutes of Health website describes as a hereditary disease causing “weakness and wasting of the voluntary muscles in the arms and legs of infants and children.”

All this, and yet he has led a “normal” life.

“It was great growing up,” said 48-year-old Soneson in a telephone interview. “I had a great time. My family and friends treated me like I didn’t have any kind of physical problem. I had great friends at school and church. My family made sure I did all the things a little boy would do growing up. I water-skied on my dad’s knees. I climbed mountains riding on my dad’s or brother’s back. I swam in both oceans before I was in college.”

Yet in kindergarten, he could barely stand through the Pledge of Allegiance. In first grade, other students began pulling him around in a red wagon, and in second grade, he started using a wheelchair. His classmates readily accepted him.

“I tended to not think of myself as being different,” he said, “and that probably helped other people not think of me as different.”

To read the full column, visit the archives section of www.danieljvance.com.

The Santa Barbara News-Press published a wonderful story this week about Gwendolyn Strong and the efforts her parents are making to let the world know that it’s time for spinal muscular atrophy to be cured.

Gwendolyn, daughter of Bill and Victoria Strong, was born with SMA Type 1.  She needs a breathing machine, a coughing machine, a sucking machine (to help her swallow) and a wide variety of other devices that keep her alive.  Her parents could have gone into a coccoon, just doing their best to take care of her.  Instead, they decided to fight.  They launched PetitionToCureSMA.com, a petition to show the support for the SMA Treatment Acceleration Act.  The act would take a number of steps to help make it easier for researchers to find a cure for SMA, which is the leading genetic killer of children under two.  The petition has gathered nearly 20,000 signatures as of this writing, and is still growing.  Fight SMA is throwing its enthusiastic support behind the effort.

To read the online version of the story, visit the Santa Barbara News-Press website.  Registration is required to view the entire story.  To download a PDF version of the story, click here.  To sign the petition and indicate your support for the SMA Treatment Acceleration Act, click on the banner below.

 FB 17 [19:32m]: Play Now | Play in Popup | Download

This is the last in a series of four Fighting Back Podcast episodes that feature audio from the Fighter Mom Friday event, held on May 9, 2008 in New York City.  The workshop was designed to educate, inform, and inspire attendees fighting against diseases or conditions affecting their children. The day-long event featured a number of speakers, and several of them have agreed to allow us to present in podcast form the information they offered during the event.

Episode 17 features a seminar from Steve Eichenauer, a partner at lobbying firm Public Strategies Washington.  He discusses how Fighter Moms can talk to their legislative representatives to raise awareness of their cause and attempt to increase funding.

Note: Mr. Eichenauer refers during his talk to a one page information sheet that he handed out during the seminar.  That information sheet is available for download in .pdf format Fighter Mom Multimedia page.

More information on Fighter Mom Friday can be found on the Fighter Mom website.  More audio from the event is available on the Fighter Mom Multimedia page, or by subscribing to this podcast.

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 us via the Fight SMA contact page. You can also leave a message in the form of a comment on this blog as well.

A new website has been launched to, in the words of NINDS’s Dr. John Porter, “help parents understand the how-when-where-why of clinical studies and clinical trials in their children.” While not a spinal muscular atrophy (SMA) specific site, the videos and articles address many of the concerns that parents have when considering enrolling their child in a clinical trial, including SMA trials. Topics include “Importance of Research In Kids,” “Safety and Protections,” “Questions You Should Consider Asking,” and “Effects on the Family.”

The site was developed and made possible by the support of: National Heart Lung and Blood Institute (NHLBI), NIH, National Institute of Child Health and Human Development (NICHD), Best Pharmaceuticals for Children Act (BPCA), National Marfan Foundation (NMF), National Center for Research Resources (NCRR), NIH, and Gerber Foundation.

Check out the website by visiting: www.ChildrenAndClinicalStudies.nhlbi.nih.gov.

After blasting the internet and email with calls for support, the entire SMA Community is waiting to learn if the Advisory Panel for the American Express Members Project will select the fight to cure spinal muscular atrophy (SMA) to move to the next round of the competition.

In its second year, the Members Project is an online program that encourages American Express cardholders to submit ideas for “innovative projects that could make a difference in the world.” The Project’s Advisory Panel will select 25 projects from those submitted and cardholders will vote for their favorites. In the end, American Express will provide $2.5 million in funding for the top five projects.

As of this morning, the project Cure SMA was listed as #25 on the overall list of “Most Nominated Projects,” receiving 2072 nominations. According to the website, “American Express is looking for projects that are achievable, innovative, and stand to have a positive impact that touches the lives of people in a significant way.” Finding a cure for SMA fits these requirements. With proper funding, SMA researchers believe that a treatment and a cure may only be years away. The science is cutting-edge and it is the position of the National Institute of Neurological Disorders and Stroke that the research “would have implications for other diseases.” And, defeating the number-one genetic killer of infants would certainly touch many, many lives.

The nominating period has ended, but AmEx cardholders and non-cardholders can still show support on the Members Project message boards. The list of 25 projects to be voted upon will the announced September 9th.