Infants & Children
A team approach and recent medical advances have improved the outlook for infants and children with spinal muscular atrophy (SMA). Cure SMA is here to serve as part of your support team with education, resources, and guidance at every step of your child’s SMA journey.
Quick Links
Has your child been diagnosed with SMA?
Email [email protected] and a member of our team will reach out to provide you with resources and support as you navigate the diagnosis.
Support Programs
We offer a variety of support programs to meet the needs of infants and children in our SMA community. See below for program descriptions and links to apply.
Living Unlimited With SMA: A Booklet for Newly Diagnosed Parents
This booklet is for new members of the SMA community experiencing an SMA diagnosis for the first time and wondering how it will impact the life of their child and that of the family. Topics include:
- Diagnosis and Moving Forward With Hope
- Supporting Your Child With SMA
- Sharing an SMA Diagnosis With Others
- Helping Extended Family Understand What SMA Means
- Positive Relationships With Partners
- Positive Relationships With Friends
- Traveling With SMA
To request a hard copy of this booklet, please email [email protected].
Caregivers Resource Guides
Cure SMA offers resource guides to support those with SMA on a range of topics to enrich daily living at home and in the community. Below are just a few of the many topics currently available:
Guide To Talking With Children About Disability
Children’s Book Recommendations
Adaptive Equipment List
Educator’s Guide to SMA
School Letter Guide
Travel Guide
Accessible Vehicle Options and Considerations
Home Modifications Guide
Bathroom Accommodations
Bathroom Equipment List
Many more!
To see all of the topics currently available and to request PDF copies via email please click here.
Educational Opportunities for Parents and Caregivers
Obtaining Support and Ongoing Care for Children With SMA After Gene Replacement Therapy
