Spinal Muscular Atrophy (SMA) Parents Help Section
>>Click here to return to Fight SMA’s Spinal Muscular Atrophy Guidebook
From Parents of Children with Spinal Muscular Atrophy
Parents of children with SMA share their stories of learning that their children were afflicted with this disease and how they responded.
- SMA: Where Faith Is the Final Word
By Martha Slay - A Real World Example
By Martha Slay - The Power of Decision and Friends in the Right Places
About the Calise Family - Building a Relationship with Your Child’s Doctor Based on Respect and Credibility
By Amy Stein - Link to FightSMA chapters
- Links to Friends in the Fight
Other Sources of Help and Information
- Family Issues By Liz Cummings and Kim Brindley (professional counselors)
- What About Siblings?
By Eleanore Rothenberg, Ph.D., LCSW, CGP - How to Handle Your Insurance Company
By Andrea Smith - Fighter Mom™
A program for any mom who not only cares for a child with a demanding disease or health condition, but who wants to get organized to defeat that condition. - Additional Assistance Resources
FightSMA often receives calls and emails from SMA families asking for help paying for equipment, medical services, or other forms of direct assistance. Because this falls outside of FightSMA’s research and public awareness focused mission, the organization cannot provide funds of this sort — but, this doesn’t mean that we can’t help families find national and state-specific resources.