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.
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.
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.
A supplemental package for teens and adults with SMA that is filled with a new set of helpful items to help gain further independence with activities of daily living. Items include Logitech Blue Snowball Microphone, WiFi smart plugs, travel UV sanitizing wand, universal cup holder, telescopic metal straws, jar opener with base pad, and a multi kitchen tools set.
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.
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.
The Adults with SMA Scholarship offers adults with SMA ages 18 and older, as well as one caregiver, waived registration fees, a stipend for travel, and one hotel room for three nights for the Annual SMA Conference.
Email [email protected] for scholarship application.
Cure SMA holds workshops specifically geared toward adults with SMA, along with exclusive lounges and receptions throughout the 4-day conference.
View agenda for list of conference events.
Find informational webinars, including panels about going to college and pursuing a career, on Cure SMA's YouTube Channel.
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].
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
Driving – Becoming Licensed
Accessible Vehicle Options and Considerations
Home Modifications Guide
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].