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.

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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.

REQUEST FORM

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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.

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lifevac-kit

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.

REQUEST FORM

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Cure SMA offers resource guides to support those with SMA and their families.  These resources cover a range of topics to enrich daily living at home and in the community. To see all of the topics currently available and to request PDF copies via email please click the request form link below.

 

Request Form Link

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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.

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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.

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Find informational webinars, including panels about going to college and pursuing a career, on Cure SMA's YouTube Channel.

Access recordings here

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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: Adults Booklet Cover

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.

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