Teens & Adults

With medical and technological advances, individuals with all types of spinal muscular atrophy (SMA) are living longer, more active, independent lives. Cure SMA is committed to ensuring that the needs of the growing and vibrant community of adults with SMA are addressed at both the national and local levels.

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Support Programs

We offer a variety of support programs to meet the evolving needs of teens and adults in our SMA community. See below for program descriptions and links to apply.

Teen & Adult Support Package

The original package for teens and adults is filled with helpful items that allow for increased independence and that have been recommended by other adults with SMA. Items include medical fleece ease sheepskin, Amazon Echo, telescopic back scratcher, long reach/grabber tool, gooseneck phone or tablet mount, remote control outlet switch kit, EZ-shampoo hair washing basin, neck and shoulder heating pad, and a fluidized positioner pillow.

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Teen & Adult Independence Assistance Package

LifeVac Support Program

Through this program, a LifeVac Home Kit is provided to any individual with SMA who requests one, at no cost to this person. 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.

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Resource Guides

Annual SMA Conference Scholarship

Annual SMA Conference Events

Educational Webinars and Panels

Cure SMA Medical Binder

Travel Support Package

The travel package is available for adults with SMA and is filled with assistive travel equipment to assist a person with SMA in flying more safely and comfortably. Items include an ADAPTS portable transfer sling, Apple AirTag and holder, twistable memory foam travel pillow, laminated pockets to hold wheelchair signs with wire keychain cables as well as a twist-n-lock stool.

Request Form Link

Contact Our Support Team

Living Unlimited With SMA: A Booklet for Adults with SMA

This booklet is geared for adults with SMA. Thanks to contributions and feedback from other adults with SMA, we have collectively pulled together this booklet on topics that are important to the adult community specifically. Topics include:

Planning for your Future and Financial Security
Career Planning and Accommodations
Advocacy
Caregivers & Personal Care Attendants (PCA)
Relationships
Mental Health
Primary Care & Preventative Health
Accessing Care & Treatment
Family Planning
Creative Solutions - Paths to Independence
Becoming a Licensed Driver
Traveling with SMA

To request a hard copy of this booklet, please email [email protected].

Madi Shares Her Experience As A Teen Living With SMA

Jose Shares His Experience As An Adult Living With SMA

Teen and Adult Resource Guides

Cure SMA offers resource guides to support teens and adults with SMA on a range of topics to enrich daily living at home and in the community. Below are a few of the many topics currently available:

Protected Savings Options Comparison Chart

Travel Guide

Driving – Becoming Licensed

Accessible Vehicle Options and Considerations

Home Modifications Guide

Bathroom Accommodations

Many more!

To see all of the topics currently available and to request PDF copies via email please click here.