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 FighterMom Disease Advocacy News

SMA Symposia Meeting at the Society for Neuroscience

Posted: September 9th, 2011 | By: Staff | No Comments
Friday, September 9th, 2011

Official Event PDF: SAVE THE DATE SfN 2011


The Society for Neuroscience will be hosting an annual conference in Washington, D.C., November 12-16, 2011.  Neuroscience 2011 is “the premier venue for neuroscientists from around the world to debut cutting-edge research on the brain and nervous system”  (SfN).  As part of this important conference, FightSMA’s Science Director, Chris Lorson, is conducting an SMA Symposia Meeting.  Among those scheduled to speak are Dr. Chien-Ping Ko, Dr. George Mentis, and Dr. Charlotte Sumner.

This meeting will be open to the public and parking will be available at the venue.  Details copied from the event website follow:

“Pretzels and endplates: Motor neuron pathology and the role of SMN in motor neuron development.”

Symposia Meeting Date & Time: Monday, November 14, 6:30 PM – 9:30 PM

Location: Walter E. Washington Convention Center

Room: 150B

Sponsor Category: University/Non-Profit

Sponsored By: SMA Organizations: Fight SMA, Families of SMA, SMA Foundation, and MDA

Spinal Muscular Atrophy (SMA) is a relatively common neurodegenerative disease caused by the loss of the Survival Motor Neuron 1 (SMN1) gene and is a leading genetic cause of infantile death. SMA is classically defined as a lower motor neuron disease, however, it is unclear why reduced levels of SMN lead to motor neuron loss. A growing number of SMA clinical trials are on the horizon, yet our understanding of neuronal development and degeneration in SMA is only now coming into focus. Chien-Ping Ko (University of Southern California), George Mentis (Columbia University), and Charlotte Sumner (Johns Hopkins University) will present cutting-edge research that details the functional deficits of SMA neurons and how the emerging pathology in rodent models and human tissues provides an essential baseline for upcoming clinical trials as well as insight into SMN-associated function. Chair: TBD Speakers (draft titles only) Chien-Ping Ko, PhD: Synaptic Defects in the Spinal and Neuromuscular Circuitry in a Mouse Model of Spinal Muscular Atrophy; George Mentis, PhD: Early Functional Impairment of Sensory-Motor Connectivity in a Mouse Model of Spinal Muscular Atrophy; Charlotte Sumner, MD: Analysis of SMA Tissue and Neuronal Pathology from Autopsies.

Contact:
Chris Lorson
SMA Organizations
Phone: 573-884-2219
E-mail: lorsonc@missouri.edu

-Please contact Chris, or FightSMA, if you have any questions about this event.

 

 

 

 

Comments (0)
Categories : FighterMom Disease Advocacy News, FightSMA News, General Information, Spinal Muscular Atrophy Events, Spinal Muscular Atrophy News Stories

Happy Mother’s Day, Fighter Moms

Posted: May 9th, 2010 | By: Staff | No Comments
Sunday, May 9th, 2010

For every mother fighting childhood genetic disease:
Happy Mother’s Day, Fighter Mom.

Thank you.

From Fight SMA and the Fighter Mom program

Comments (0)
Categories : FighterMom Disease Advocacy News

Fighting Back Podcast #22 – This Side Up (Kyra Oliver)

Posted: September 24th, 2009 | By: Staff | No Comments
Thursday, September 24th, 2009

fighting-back-22-092409.mp3
A Fighter Mom is someone who has been touched by tragedy, and gains the will to fight to help ensure no one else has to deal with the same pain.  In this episode of Fighting Back Podcast, we meet someone who fits that description to a “T”.

Kyra Oliver’s four-month-old son, Hayes, died in 2002.  The cause of death was given as Sudden Infant Death Syndrome, or SIDS.  Within days of his death, as Kyra was still fighting through the anguish, she founded the Hayes Foundation to raise awareness of SIDS.  In 2006, she launched a campaign to educate mothers and caregivers that the safest way for infants to sleep is on their backs.  The campaign began in Kyra’s home state of Virginia and is now spreading to other states.

Kyra continues her fight, and is now planning a fundraiser in her home city that combines her desire to educate about how to avoid SIDS and her love of competitive running.  The Capital 10-Miler is being held on Saturday, October 3.  For more information, visit http://www.rrrc.org.

To listen to our interview with Kyra, can use the Flash mp3 player above.  You can also 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.

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

Fighting Back Podcast #21 – A Room Full of Fighter Moms (Martha Slay)

Posted: August 20th, 2009 | By: Staff | No Comments
Thursday, August 20th, 2009

fighting-back-21-090820.mp3
People frequently ask, “What is a Fighter Mom?”  Fight SMA president and Fighter Mom founder Martha Slay recently spoke with an entire room full of them, at the Rhett Syndrome Foundation’s 25th Annual Conference in Northern Virginia.  She discussed the values of Fighter Moms and how to be a more effective one.  In this episode of Fighting Back Podcast, we bring you the audio from her keynote address.

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.

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

FighterMom Friday

Posted: February 25th, 2008 | By: Staff | No Comments
Monday, February 25th, 2008

You’re going to be hearing a lot about FighterMom Friday in the coming month or so. The event, which will be held on the Friday before Mother’s Day (May 9) at the New York Palace Hotel in Manhattan, will be a gathering of moms who are fighting against diseases or conditions affecting their children. The day will be full of speakers, conferences, and seminars, all focused on helping FighterMoms with their fight. The keynote speaker, we’re excited to announce, will be Katherine Crier. You know her from watching her on Court TV, CNN, Fox NewsChannel, and ABC. More will be announced in the coming weeks!

You can view the FighterMom Friday invitation here.

Comments (0)
Categories : FighterMom Disease Advocacy News, Spinal Muscular Atrophy Events
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