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 2012
    • 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 May 2007 – Page 2

Congressman Patrick Kennedy Speaks on Spinal Muscular Atrophy Research

Posted: May 16th, 2007 | By: Staff | No Comments
Wednesday, May 16th, 2007

At the recent 2007 FightSMA National Spinal Muscular Atrophy Conference, Congressman Patrick Kennedy of Rhode Island addressed the attendees about spinal muscular atrophy research funding and the SMA Treatment Acceleration Act. The proposed legislation, developed through a collaborative effort between FightSMA, the SMA Foundation, and Families of SMA, would establish a national clinical trials network to develop treatments that are safe and effective for SMA patients.

Conference attendee Karin Vallo captured the speech on video. Karin is a leader in the Desiree’s Buddies/FightSMA Southwest Chapter in Albuquerque, New Mexico, and is the grandmother of Desiree. A big “thank you” goes out to Karin for helping us make this video available!

Comments (0)
Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Science and Research, Spinal Muscular Atrophy Videos

Fight SMA Program FighterMom Prepares for Mother’s Day Relaunch

Posted: May 10th, 2007 | By: Staff | No Comments
Thursday, May 10th, 2007

Mothers as Disease Advocates - FighterMomA “fighter mom” is a mother with a purpose. She is organized to fight a disease or disorder that’s affecting her child, by raising money for research, raising awareness, and making sure everyone knows there’s a horrible disease that needs our attention. She is a disease advocate. The FighterMom™ program salutes these special moms this Mother’s Day Weekend, and is now providing them a place where they can easily find one another. The program, developed by international nonprofit organization Fight SMA, is relaunching this Mother’s Day weekend as part of an expansion from an informational resource to a community.

FighterMom is the brainchild of Joe and Martha Slay, who founded Fight SMA in 1991 after their son, Andrew, was diagnosed with spinal muscular atrophy (SMA). While theirs is a specific fight against the leading genetic killer of children under two, they believe that the lessons they’ve learned are lessons that can be taught to people fighting other diseases.

As part of the relaunch, the FighterMom website has been redesigned, not only to better present information but also to include the FighterMom Community. The new community includes message boards, the FighterMom Blog, the ability for visitors to easily create their own blogs, and the Fighting Back Podcast (subscribe to the Fighting Back Podcast Feed), which features inspirational stories about people and families fighting serious or incurable diseases.

“Isolation is one of the biggest problems facing FighterMoms, partly because in many cases you really are one of very few people dealing with your disease,” said Mrs. Slay, who is president of Fight SMA. “With this relaunch, we want to create a place with so many like-minded people that visitors can’t help but realize there are others out there just like them.”

The new site is also more organized, and provides a place for visitors to learn about companies like Children’s Wear Digest that support the FighterMom program.

One thing that hasn’t changed is the FighterMom Manual. Written by Joe and Martha Slay, it costs individuals only the price of shipping. The manual includes everything they can teach about how they built Fight SMA. New or veteran FighterMoms can use it to educate themselves on topics such as how to organize and strategies to get attention for your disease.

“People who are organizing to fight a disease run into many of the same problems, even though their situations may be vastly different,” said Mr. Slay. “We believe we can provide a great deal of help to them, and by creating the FighterMom Community we can also provide a place where parents of sick children can learn from and support each other.”

To learn more about the FighterMom program, please go to www.fightsma.org/fightermom!

Comments (0)
Categories : FighterMom Disease Advocacy News

Interview with Fight SMA’s Martha Slay About the FighterMom Relaunch (Podcast Ep. 4)

Posted: May 10th, 2007 | By: Staff | No Comments
Thursday, May 10th, 2007

fightingback-ep4-070510.mp3
Fighting Back Podcast by Fight SMA and FighterMomIn Episode 4 of the Fighting Back Podcast, produced by Fight SMA and FighterMom, we continue our discussion with Fight SMA President Martha Slay. In Episode 3 we discussed the Fight SMA National Spinal Muscular Atrophy Conference in Washington D.C., as well as what it takes to be a FighterMom. In the latest episode, she talks about the exciting relaunch of the FighterMom program. The program, developed by Fight SMA, is designed to support, educate, and inform anyone who has become a disease advocate fighting against a disorder affecting a child.

If you have a comment or question or are interested in having us tell your story, or the story of someone you know, in the Fighting Back Podcast, please contact us via the Fight SMA contact page, or leave us a message at 206-984-3669. Of course, you can always leave a message in the form of a comment on this blog as well.

To hear Episode 4 of the Fighting Back Podcast, you have several options. You can listen using the Flash mp3 player above. Or, if you’re a fan of podcast RSS feeds, you can use the Fighting Back Podcast Feed in your favorite feed reader. If you’re an iTunes user you can subscribe and download via our iTunes store. Finally, you can, of course, download this episode using the link above.

Comments (0)
Categories : FighterMom Disease Advocacy News, Podcasts

Spinal Muscular Atrophy Researchers to Present Therapeutic Strides at ASGT Annual Meeting

Posted: May 8th, 2007 | By: Staff | No Comments
Tuesday, May 8th, 2007

Spinal muscular atrophy (SMA) researchers Tristan Coady and Travis Baughan, from FightSMA Science Director Dr. Chris Lorson’s laboratory at the University of Missouri, will attend and present their studies at the American Society of Gene Therapy (ASGT) Meeting in Seattle, May 30th – June 3rd.

At this year’s ASGT meeting Travis will present, “Modulating SMN2 pre-mRNA splicing: Identification of optimal targets for bi-functional RNAs.” Travis has developed second generation bi-functional RNAs that target repressor elements within SMN2 while recruiting positive factors to facilitate exon7 inclusion. Bi-functional RNAs have two functional domains, one that is a RNA sequence complimentary to the target RNA (in this case SMN2) and another that serves as a binding substrate for splicing factors which in turn promote full-length SMN expression. The original observations concerning the successful application of first generation bi-functional RNAs to alter SMN2 splicing and promote increased inclusion of exon7 were reported in the journal Molecular Therapy, 2006. The current goal of these studies is to validate the effectiveness of bi-functional RNAs in mouse models of SMA. The successful application of this technology in SMA to promote inclusion of SMN2 exon7 can be easily adapted to other diseases that are a result of aberrant pre-mRNA splicing.

Another therapeutic approach being investigated by Tristan Coady is the application of trans-splicing. Trans-splicing relies upon pre-mRNA splicing occurring between two different molecules; the endogenous RNA (for example SMN2) and the therapeutic RNA. The therapeutic RNA used in these studies contains SMN1 exon7 which when trans-spliced will form an mRNA with exons1-6 of SMN2 and exon7 of SMN1. Tristan’s studies have successfully identified trans-splicing RNAs that increase expression of full-length SMN and produce elevated levels of SMN in SMA patient fibroblasts. These studies are currently in press in the journal Molecular Therapy. The functionality of these trans-spliced RNAs is currently being tested in both tissue culture and mouse models. Tristan will present a podium presentation at the ASGT meeting entitled, “SMA Based Therapeutic Trans-Splicing RNAs Repair SMN1 Deficiency.”

FightSMA is a proud sponsor of the 10th Annual ASGT Meeting and will also be present in the Exhibit Hall at booth 324. Visitors to the booth can receive information about FightSMA research funding opportunities and can meet FightSMA scientific representatives Dr. Chris Lorson and Dr. Monique Lorson, both of the University of Missouri.

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

N.C. Parents Visit Capitol Hill on Behalf of Spinal Muscular Atrophy Research

Posted: May 7th, 2007 | By: Staff | No Comments
Monday, May 7th, 2007

The Charlotte Observer on May 6, 2007 ran an article about the Bolton Family who started FightSMA’s North Carolina chapter, Eleanor and Jack’s Buddies, in honor of their two children who have spinal muscular atrophy. John and Holly Bolton attended the FightSMA Annual Conference in Washington D.C. in April where they visited the offices of their representatives on Capitol Hill, including North Carolina’s Representative Sue Myrick.

From the article:

Their mission: Help kids in broken bodies
Couple back from Washington, where they sought U.S. funding to treat neuromuscular disorder

JOE MARUSAK

HUNTERSVILLE — Everyone told John and Holly Bolton not to worry, toddler Eleanor would walk soon enough. She didn’t.Eleanor, now 4, has spinal muscular atrophy, the Boltons learned.

The incurable disorder kills more infants than any other genetic disease. Son, Jack, 2, also inherited the responsible mutated gene. Many kids can still live a long life, but many don’t. “Fifty percent don’t live past age 2,” John Bolton said.

The disease affects kids’ ability to walk; only a few can stand up. It impairs their breathing, forcing them onto breathing machines. In more severe forms, lungs quit or fatal pneumonia invades.

The Boltons returned from Washington last week, where they and other parents lobbied for the proposed SMA Treatment Acceleration Act.

The legislation would establish a national clinical trials network to develop safe and effective treatments for SMA patients and possibly lead to a cure for the disorder that strikes as many as one in 6,000 infants.

“It’s so close,” John Bolton said. “If we had parity in funding from government, it would be a done deal.”

To read the full article, click here.

Comments (0)
Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Families and Friends, Spinal Muscular Atrophy News Stories
« Previous Page
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

  • Don’t Forget: Rock’N Out for Isabella Is This Weekend
  • Videos From the 2012 FightSMA Annual Research Conference: Michael Calise
  • How to Help Us Fight SMA
  • Thank You Avery
  • Meet Avery and her Bucket List

Categories

  • Featured
  • Fighter Kids
  • FighterMom Disease Advocacy News
  • FighterMom News
  • FightSMA Articles
  • FightSMA Featured Families
  • FightSMA News
  • General Information
  • 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