Layout Image

Please support our fight.
Donate to FightSMA.
  • Home
  • SMA Guidebook
    • What is SMA?
    • SMA Fact Sheet
    • SMA Type 1
    • SMA Type 2
    • SMA Type 3
    • Adult Onset SMA
    • SMARD1
    • Diagnosis & Tests
    • Symptoms & Treatment
    • SMA Resources
    • SMA Doctors
    • Non-Medical Help
    • SMA Multimedia
    • Friends in the Fight
  • Research
    • Research Legacy
    • SMA Gene Therapy
    • 2009 Grant Awards
    • Past Grant Awards
    • SMA Research RFP
    • Articles & Resources
    • SMA Clinical Trials
    • Funded Institutions
    • Disease Directory
  • Chapters
  • Events
    • Annual Conference 2011
    • Annual Conference 2010
    • Annual Conference 2009
    • Annual Conference 2008
    • Annual Conference 2007
    • Annual Conference 2006
    • Annual Conference 2005
  • Capitol Hill
    • SMA Coalition
    • Be a Helping Hand
    • Contact Your Representatives
  • About FightSMA
    • Annual Reports
    • Board of Directors
    • International Advisory Council
    • Scientific Advisory Committee
    • Privacy Policy
    • Spinal Muscular Atrophy Newsroom
    • Contact FightSMA
  • Blog
  • Please Give
    • Make a Miracle
    • Other Ways to Help
    • Merchandise

Archive for September 2008

NIH Director Steps Down

Posted: September 24th, 2008 | By: Staff | No Comments
Wednesday, September 24th, 2008

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.”

Comments (0)
Categories : General Information, Spinal Muscular Atrophy Science and Research

New Fight SMA Richmond Event: To Fight Life Through

Posted: September 22nd, 2008 | By: Staff | No Comments
Monday, September 22nd, 2008

To Fight Life Through 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! During the party, enter the Tiffany & Co. Raffle for a chance to win one of five signature Tiffany & Co. pieces! 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!

Comments (0)
Categories : General Information, Spinal Muscular Atrophy Events

Petition Crosses the 20,000 Barrier, and Keeps Growing

Posted: September 16th, 2008 | By: Staff | No Comments
Tuesday, September 16th, 2008

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!

Comments (0)
Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends

An Example of Living with Spinal Muscular Atrophy

Posted: September 15th, 2008 | By: Staff | No Comments
Monday, September 15th, 2008

Daniel J. VanceFreelance 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.

Comments (0)
Categories : Spinal Muscular Atrophy News Stories

PetitionToCureSMA.com and its Inspiration Profiled

Posted: September 12th, 2008 | By: Staff | No Comments
Friday, September 12th, 2008

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.

Comments (0)
Categories : SMA Treatment Acceleration Act, Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy News Stories
Next Page »

Search:

Navigation

Spinal Muscular Atrophy Blog
Fight SMA Home
Fighting Back Podcast

 Blog feed
Podcast feed

iTunes Users: Visit the Fighting Back Podcast Store

Connect

Keep up with FightSMA:
• Twitter
• Facebook
• YouTube
• SMASpace
• Email FightSMA

Awards

Recent Posts

  • GSF Giving Away 50 iPads in 50 Weeks
  • Meet New FightSMA Executive Director Ron Imbach
  • FightSMA Names New Executive Director; Relocates Headquarters to Nation’s Capital
  • Isis Initiates Phase 1 SMA Clinical Study
  • A Letter from Martha Slay

Categories

  • Fighter Kids
  • FighterMom Disease Advocacy News
  • FighterMom News
  • FightSMA Articles
  • FightSMA News
  • General Information
  • Not on home page
  • Podcasts
  • SMA Treatment Acceleration Act
  • Spinal Muscular Atrophy Events
  • Spinal Muscular Atrophy Families and Friends
  • Spinal Muscular Atrophy News Stories
  • Spinal Muscular Atrophy Science and Research
  • Spinal Muscular Atrophy Videos
  • Uncategorized
  • Webisodes
Spinal Muscular Atrophy | FightSMA
Copyright © 2012 All Rights Reserved
Site developed for FightSMA by EndGame PR
Twitter Facebook SMASpace YouTube Email Donate
Home | What is SMA? | Research News | Chapters | Events | SMA Merchandise | SMA Coalition | Make a Donation | Spinal Muscular Atrophy Type 1 | Spinal Muscular Atrophy Type 2 | Spinal Muscular Atrophy Type 3 | Spinal Muscular Atrophy Type 4 | Spinal Muscular Atrophy Diagnosis | Spinal Muscular Atrophy Symptoms | Spinal Muscular Atrophy Parents | Spinal Muscular Atrophy Blog