Cure SMA’s national support programs are available to all individuals with spinal muscular atrophy (SMA) and their families who reside in the U.S. Most of these resources are available at no cost.
No matter your connection to SMA, we’re committed to helping you navigate your journey. Learn more about our practical support programs and national conference.
We provide information packets to anyone who requests one, at no charge. In addition to newly diagnosed families, this could include families or individuals not newly diagnosed who are looking for more comprehensive information on SMA; relatives, friends, or supporters of someone with SMA who want to learn more; and healthcare providers who want to raise the standard of care for people with SMA.
Through this long-standing program, Cure SMA automatically sends a care package to every newly diagnosed family who contacts us following an SMA diagnosis, and who resides in the U.S. This care package is filled with toys and helpful items that have been recommended by other SMA parents and is customized for the diagnosed child’s needs.
A LifeVac Home Kit is a non-powered, non-invasive, single-use only airway clearance device developed for resuscitating a victim with an airway obstruction when current choking protocols have been followed without success. LifeVac does not allow any air to enter a choking victim on the downward motion. It is available to anyone with SMA who requests one, at no cost to this person.
Cure SMA offers teens and adults in the SMA community with a support package and independence assistance package, each filled with helpful items that have been recommended by other adults with SMA. The items allow for increased independence with certain tasks they might not have been able to do on their own. This program is offered to any teen or adult with SMA in the U.S.
The Responder PHR (Personal Health Record) with Medical Alert Bracelet is offered to help in an emergency. Through this program, a Responder PHR package is provided so medical personnel will have immediate access to the patient’s medical records stored online, whether the patient can communicate for themselves or not. This program is offered to anyone with SMA.
Annual SMA Conference
Our Annual SMA Conference is the largest SMA conference in the world. Through the conference, we bring together researchers, healthcare professionals, individuals with SMA, and families to network, learn, and collaborate. The Conference includes a variety of workshops, keynote sessions with leading researchers, a family-friendly research poster session, and more—plus fun events like our meet-and-greet, pajama party and movie night, as well as teen and adult social activities.
Cure SMA offers scholarships for individuals and families who wish to attend the Annual SMA Conference.
The Adults with SMA Scholarship program offers a scholarship to every adult with SMA and their personal care assistant. The scholarship will cover registration fees, a travel stipend and one hotel room for three nights at the specified conference hotel.
The First Time Attendee Scholarship program is a scholarship that covers any individual with SMA who has never attended the Annual SMA Conference previously, and up to four immediate family members. The scholarship covers registration fees for those attendees, as well as one hotel for three nights at the specified conference hotel. Thank you to the support from the Luke 18:1 Foundation for sponsorship of this scholarship!
For families who are not newly diagnosed, we offer general, needs-based scholarships as well. Attendees can reach out to Cure SMA to receive information on any of these scholarship opportunities.
Questions about the Annual SMA Conference?
Email [email protected] or call (800) 886-1762.
Through our equipment pool, Cure SMA loans necessary medical equipment free of charge to individuals with SMA. Our equipment inventory changes often as new equipment is donated and other items are loaned out. Please reach out to [email protected] to check on item availability. If the specific item you are looking for is currently available, you will be asked to fill out a waiver and once completed, we will ship out the item to you right away. If the item you are looking for is not currently available, you will be added to a waiting list and contacted as soon as the item becomes available. Email [email protected] to check on item availability or if you have any questions on this program.
While on loan, individuals and families are responsible for all professional upkeep on the equipment. Our goal is to keep these items in good condition so they can help others in the future
We request that any equipment pool items not being utilized be returned to Cure SMA so they can be passed on to another person or family in need
We are not able to loan out respiratory equipment or supplies that require doctor authorization
Unfortunately, due to customs regulations and shipping costs, we can only ship equipment within the continental U.S.
We are not able to accept donations for power wheelchairs or oversized medical equipment that is too large/heavy to ship