Care Packages

Cure SMA provides care packages for children within the US who have been recently diagnosed with SMA.

Many of the items in these care packages have been suggested by families based on their own personal experience and some are funded by families in honor or in memory of their children.

Care Packages and Other Resources

Please call our office at 800.886.1762 or email infopack@curesma.org to request or receive additional information about the resources available to newly diagnosed families.

Information Packets

A comprehensive information packet about SMA is sent to every person who contacts Cure SMA. These packets cover topics such as:

  • Understanding SMA
  • Genetics
  • Diagnostic testing
  • Current research updates
  • Medical issues
  • And more

Visit our information packet page to learn more about what’s included in these information packets, and how to request one.

Care Packages for SMA Type I

Type I care packages are generously funded by Adi and Shaina Rappoport and the Jacob Isaac Rappoport Foundation, in memory of their Shooting Star, Jacob. The care packages include toys appropriate for children with SMA type I and a newly diagnosed binder. These binders contain important information about SMA, including all of the SMA Care Series Booklets, and a list of resources available in your state. This binder also acts as an organizational tool, so families can keep important medical information about their child all in one location.

Email infopack@curesma.org to request a care package.

Wagons for SMA Type I

When you receive an SMA type I care package, you will also receive information on our wagon program. Babies with type I often lose muscle tone and cannot adequately support themselves. When this happens, they must remain horizontal. Many families have found a wagon helpful to transport their children around the house or yard, to visit friends or family, and to get to doctors’ offices or other appointments.

It is more comfortable for children to be transported in the wagon, instead of being picked up and carried frequently for feedings, diaper changes, etc. For added comfort, we recommend lining the wagon with egg-crate foam, memory foam, or a sheepskin blanket. Attachments can be used to hang favorite toys, tie balloons, or hang feeding bags.

The wagons are funded by Kennady’s Dream, founded by Corey and Erin Quinnell in loving memory of their daughter, Kennady. To request a wagon, email familysupport@curesma.org.

Car Beds for SMA Type I

We also make car beds available for children with SMA type I. Car beds allow a child to lie safely and comfortably while traveling in the car. For babies with SMA type I, these car beds are vital as they may experience apnea and oxygen desaturation if they are placed in an infant car seat. The car beds are funded by Sweet Baby Zane, founded by Hillary and Keith Schmid in memory of their precious baby girl, Zane.

To request a car bed, email equipment@curesma.org.

Care Packages for SMA Type II and III

Most of the contents in our type II and III care packages have been suggested by other SMA families based on their own personal experience. The contents of our care packages change regularly as new items are donated or suggested, but they often include items like:

  • Finger puppets
  • Magna Doodle
  • Handmade quilt
  • Lightweight balloons on a stick
  • Motorized bubble blower
  • O-ball
  • Play-Doh
  • Sheepskin blanket
  • Silkie security blanket
  • Small plastic animal toys

Type II and III care packages also include a newly diagnosed binder. These binders contain important information about SMA, including all of the SMA Care Series Booklets, and a list of resources available in their state. This binder also acts as an organizational tool, so families can keep important medical information about their child all in one location.

Type II care packages are generously funded by the Cash Scanlon Phillips Foundation. 

Email infopack@curesma.org to request a care package.

Wagons for SMA Type II and Type III

Cure SMA also offers wagons to SMA type II and type III families. Many families have found a wagon helpful to transport their children around the house or yard, to visit friends or family, and to get to doctors’ offices or other appointments.

The wagons are funded by Kennady’s Dream, founded by Corey and Erin Quinnell in loving memory of their daughter, Kennady. To request a wagon, email familysupport@curesma.org.

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