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.
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.
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.
We provide an unbiased, comprehensive information packet to anyone who requests one. These packets cover topics such as understanding SMA, genetics and testing, current research updates, medical issues, managing daily life, and more.
To request an Information Packet, email us at [email protected]
Every newly diagnosed family within the U.S. who contacts us receives a Newly Diagnosed Care Package. Each package has toys appropriate to the child’s age and SMA Type. Many items have been suggested by other SMA parents based on their own experiences.
To request a Care Package, email [email protected]
These are included in the care package and contain important information about SMA, including our Care Series Booklets and a list of resources available in your state. This binder acts as an organizational tool that allows you to keep important medical documents and information all in one location.
Cure SMA offers a wagon to every SMA family who requests one. Wagons are a part of our care package program and are sent brand new and at no charge for each family to keep. These wagons are beneficial for children with both early and later onset SMA of all abilities and are ideal for parents to be able to transport their child without the use of a stroller or wheelchair.
To request a wagon, email [email protected]
The Responder PHR with Medical Alert Bracelet and Keychain is offered to help identify medical needs in case of a medical emergency. Through this program, a Responder PHR (Personal Health Record) package is provided so medical personnel will have immediate access to the patient's medical records stored online, whether the patient is able to communicate for themselves or not.
Through this program, a LifeVac Home Kit is provided to any individual with SMA who requests one, at no cost. This is a non-powered, non-invasive, single-use only airway clearance device developed for resuscitating a victim with an airway obstruction. It is easy to use in an obstructed airway emergency and is beneficial for those who the Heimlich maneuver is not possible.
Cure SMA loans necessary medical equipment free of charge such as bath chairs, manual wheelchairs, therapy chairs, etc. Our equipment inventory changes often as new equipment is donated and other items are loaned out.
To find out if an item is currently available, please email [email protected]
The Annual SMA Conference is the world’s largest gathering of people with SMA, families, researchers, and healthcare professionals. Each year, we host a special program just for newly diagnosed families and offer a first-time attendee scholarship program that covers the costs of up to four family members’ registration fees, as well as one hotel room for three nights. Through the support of generous donors, we also offer need-based scholarships for others who are not newly diagnosed.
Email [email protected] to learn more.
Our community support staff is here to help and assist those with SMA and their families. This may mean providing information on SMA, connecting you with resources in your community, or just being a listening ear.
Our Support Team can be reached via phone at (800) 886.1762 or email at [email protected].
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
Accessible Vehicle Options and Considerations
Home Modifications Guide
Bathroom Equipment List
To request a copy of any of the above resources or for a full list of all the topics that are available, please email [email protected].
Educational Opportunities for Parents and Caregivers
Obtaining Support and Ongoing Care for Children With SMA After Gene Replacement Therapy
Understand the benefits, administration, and treatment outcomes of gene replacement therapy for SMA.
Describe the beneficial effects of treatment with gene replacement therapy on people with SMA.
Discussion of strategies and/or methods to maintain motor function and mobility in people with SMA.
Recognize the therapeutic importance of maintaining optimal nutrition in people with SMA.