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.
The FSMA Care Packages are sent to every newly diagnosed type one family. They were created and are put together by parents Donna and Alex Abraldes, who send SMA type 1 appropriate toys, videos and other items that help stimulate SMA infants. These packages were inspired by Donna and Alex's daughter Deirdre, who had SMA type I, and are funded by Families of SMA. 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
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.
The CAM fund for Families of SMA is in memory of Caitlyn Ann Munson. The CAM fund, through FSMA, currently helps to fund car beds for type 1 children and Families of SMA sends them out to the families that are in need of them. The families send them back when they are done so that they can be used again.
The CAM fund also helps to fund sheep skin blankets to be sent out to all newly diagnosed type 1 babies as they register with Families of SMA. The sheep skin blankets help with tissue break down and give the babies extra comfort and the ability to sleep better with out having to be turned as often. For more information please contact the FSMA office at 800-886-1762.
Tumbleweed’s Wagon Fund for FSMA honors the memory of Braden (Tumbleweed) Ray Campbell (29 June 2003 – 05 May 2004). Through charitable donations and fundraising efforts, the fund helps to purchase Radio Flyer Wagons for type 1 children. FSMA sends the wagons out upon request to anyone having or caring for a child diagnosed with type 1. 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, stores, 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. The sides of the wagon can be removed so the babies can lie in them to nap or to watch their favorite television program, video, or DVD. For comfort, we recommend lining the wagon with egg-crate foam, memory foam, or a sheepskin blanket provided by the Families of SMA C.A.M. fund. Tumbleweed’s Wagon Fund is 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. We will diligently work to promote awareness of SMA, conduct and support fundraising efforts to help fund restorative treatments and a cure, and be a source of support for families whose lives have been altered by a diagnosis of SMA. For more information, please contact the FSMA office at 800-866-1762
Dinners by the Rappoport Foundation - In loving memory of Jacob Isaac Rappoport (12/27/01-10/01/02.) ".....While our son was sick, we found ourselves extremely busy trying to balance meeting his needs with our own, as well as the rest of our family's. A few times, we received dinners from families in our community or from friends. We found this simple act to be so thoughtful and appreciated it at a time when completing even the smallest task was a huge undertaking. We would love to arrange to have dinner delivered to your home, so that for even one day you have one less thing to think about and can spend a few extra minutes reading a story, singing songs or giving your baby some extra kisses." For more information, contact Families of SMA at 800-886-1762 or visit http://www.ourshootingstar.com/.
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/.
