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 July 2009 – Page 2

SMA Education Event for Families

Posted: July 8th, 2009 | By: Staff | No Comments
Wednesday, July 8th, 2009

SMA Education Day: Clinical Updates for Parents of Children with SMA

The University of Wisconsin Pediatric Pulmonary Center is sponsoring a free workshop open to parents, family members, and caregivers of children with spinal muscular atrophy (SMA). Presenters Mary Schroth, MD; Karen Patterson, PT; Krista Kienitz, OT; and Mary Marcus, MS, RD, CSP will discuss topics including “Pulmonary Issues in SMA,” “Physical Therapy/Occupational Therapy – What’s Best for Your Child,” and “Nutrition Issues in SMA.” Continental breakfast and lunch included.

Time: August 15, 2009 from 8:30am to 1:30pm

Location: University of Wisconsin Hospital and Clinics, Room G5/152

Registration Deadline: July 31, 2009

To register for the workshop, email Kate Kowalski, MSSW, Administrator and Family Involvement Faculty at kmkowalski@pediatrics.wisc.edu with the following information:

Attendee’s Name(s)
Child’s Name
Address
Home Phone Number
Cell Phone Number
Email Address

Comments (0)
Categories : Spinal Muscular Atrophy Events, Spinal Muscular Atrophy Families and Friends

Fighting Back Podcast #20 – Understanding Genetic Testing (Dr. Joann Bodurtha)

Posted: July 8th, 2009 | By: Staff | No Comments
Wednesday, July 8th, 2009

fighting-back-20-090708.mp3
Genetic testing can be an incredible tool, but it can be difficult to understand how it works and what to expect.  We’re honored to have as our guest on the latest episode of Fighting Back Podcast, Dr. Joann Bodurtha, a geneticist from Virginia Commonwealth University Medical Center in Richmond, Virginia.  She explains how these tests can be important for parents and parents-to-be.

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 : Podcasts

Fight SMA Launches The Thumb Drive

Posted: July 7th, 2009 | By: Staff | No Comments
Tuesday, July 7th, 2009

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.

Comments (0)
Categories : FightSMA News, Spinal Muscular Atrophy Videos
« Previous 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