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 FighterMom Disease Advocacy News – Page 2

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
« 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