Type I Resources for Families
The programs below have been designed by Type I families to assist other Type I families. Thanks to the generous support of many, Families of SMA is able to assist families in making living with SMA a little less stressful.
If you know someone who has been recently diagnosed with SMA, please e-mail infopack@fsma.org to request a free informational packet.
The FSMA Care Packages are sent to every newly diagnosed type one family. These care packages are funded by the Jacob Isaac Rappoport Foundation, in memory of their Shooting Star, Jacob, who had SMA type I. To learn more about the Jacob Isaac Rappoport Foundation, please visit http://ourshootingstar.com/. Any new family interested in receiving a care package should call the FSMA National Office at 1-800-886-1762 or e-mail infopack@fsma.org
Car Beds - Families of SMA is thrilled to have received generous funding from Sweet Baby Zane and Hillary & Keith Schmid to purchase much needed car beds for the FSMA Equipment Pool. These car beds are vital to the well being of SMA Type I infants, who may experience possible apnea and oxygen desaturation if they are placed in an infant car seat. These car beds enable an infant with special needs to be positioned in the prone or laying down position, safely and comfortably in the car. After their precious daughter Zane passed away, Hillary and Keith were determined to bring awareness to SMA. Along with their supportive community, Hillary and Keith formed Sweet Baby Zane and organized fundraisers in Zane’s memory. Sweet Baby Zane raises its funds for Family Support programs at Families of SMA, such as purchasing these car beds in the FSMA Equipment pool. They originally provided enough funding for Families of SMA to purchase 30 Hope Car Beds, which have now been sent to over 50 SMA families. Families of SMA has now been able to purchase an additional 27 car beds for the FSMA Equipment Pool, bringing the grand total of car beds purchased from Sweet Baby Zane and the Schmid Family to 57! If you are interested in recieving a car bed for your child, please contact the FSMA office at 800-886-1762 or email equipment@fsma.org.
Radio Flyer Wagons - These wagons are sent to newly diagnosed type I children. Families of SMA sends the wagons to all newly diagnosed families as soon as they contact FSMA. Once the babies lose muscle tone (hypotonia) and cannot adequately support themselves or lose their swallow and must remain horizontal, the wagons are beneficial for transporting them around the house, yard, doctors’ offices, hospitals, etc. The babies love to be pulled around in the wagons and we believe it is more comfortable for them to be moved from one location to another in them as opposed to being picked up and carried frequently for feedings, diaper changes, etc.; particularly after they become more hypotonic. Additionally, attachments can be added to the wagon to hang favorite toys, tie balloons, or hang bolus or enteral feeding bags. For comfort, we recommend lining the wagon with egg-crate foam, memory foam, or a sheepskin blanket. We are dedicated to providing a product that is comfortable and enjoyable for the child and, that in some small way, makes the challenge of dealing with spinal muscular atrophy more manageable for parents and caregivers. For more information, please contact the FSMA office at 800-866-1762
FSMA Equipment Pool - FSMA has a good collection of equipment suitable for SMA children, including respiratory support items. Call the FSMA office at 800-886-1762 or e-mail equipment@fsma.org for information.
SMA Community Connections - This social network community site adds a new feature that allows families from all over the world to connect with each other to chat, organize, and share stories, photos, news, and information. Just log in at www.smacommunity.org and start sharing. Knowing there are others out there fighting alongside you is incredibly empowering, and the advice and personal anecdotes can make a real difference in the lives of you and your family.
Angel Baby Foundation - is devoted to comforting families touched by Spinal Muscular Atrophy in their children by lending an empathetic ear, providing meals, home support, gift baskets, resources, and more. For more information, please contact the FSMA office at 800-866-1762 or visit http://www.angelbabyfoundation.org/.
