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Spinal Muscular Atrophy Organizations |
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Organization's Name & Description: |
Organization's Link: |
| Marshall's Miles - a 501(c)3 organization dedicated to help find a cure for Spinal Muscular Atrophy and provide assistance to its victims and their families. Donations will be used to help fund necessary medical equipment and accessibility options to families who have been denied coverage by their health care insurance, as well as fund research for a cure through FSMA. | http://www.marshallsmiles.com |
| Our SMA Angels - A free host for websites for families who have children with SMA. Our SMA Angels graciously hosts B4SMA's website. | http://www.our-sma-angels.com |
| SMA Support - an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding SMA | http://www.smasupport.com |
| Fight SMA - created to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the number-one inherited cause of infant death. The organization pursues this objective by raising awareness and funding for SMA research. | http://www.fightsma.org |
| Miracle for Madison & Friends - dedicated to raising money to help OSU researchers find a cure for Spinal Muscular Atrophy (SMA). The website has information on SMA, including ways to help find a cure, updates on research, merchandise to show your support as well as pictures and stories about Madison and her many friends. | http://www.miracleformadison.org |
| Families of SMA (FSMA) - raising funds to advance research to find a treatment and cure for Spinal Muscular Atrophy, and to support all those affected by SMA. Support comes from numerous individual donations and fundraising events held by volunteer families and our chapters. | http://www.fsma.org |
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Support Groups for SMA Families |
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Support Group's Name & Description: |
Support Group's Link: |
| SMASpace - social networking site for the SMA community | http://smaspace.ning.com |
| SMA Support Chat - for those who would like to talk back and forth publicly yet privately. If you are interested in joining up, jumping in and talking with other SMA parents, children's caretakers, or other family/friend members dealing with SMA by semi-private e-mail, join! | http://www.smasupport.com/chat_list.htm |
| SMA Support Guestbook - works as a message board for parents, caregivers, aunts, relatives, friends, or anyone to leave messages, ask questions, provide support or information, at any time! | http://www.smasupport.com/guestbook |
| FSMA Forum - a forum for questions and support | http://www.fsma.org/bbfsma |
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Other Blanket & Quilt Organizations |
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Organization's Name & Description: |
Organization's Link: |
| C.O.L.E.'s Quilts - Providing cross stitch Quilts of Love to children with Spinal Muscular Atrophy | http://www.our-sma-angels.com/colesquilts |
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Other Gift & Care Package Organizations |
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Organization's Name & Description: |
Organization's Link: |
| Addy's Adaptations - provide toys and other devices to families who are dealing with a family member who has SMA. | http://www.addysadaptations.com |
| Kyle's Pillow Project - make pillows in different shapes and sizes to use for children with special needs, especially Spinal Muscular Atrophy (SMA). They are in cute prints of any kind and we use them to position for sleeping, watching TV, sitting in chair. | http://www.our-sma-angels.com/kyle/pillow_project.htm |
| Eminnea Inc - a resource for families and organizations fighting to find a cure for Spinal Muscular Atrophy. Dedicated to helping you connect with local and internet-based resources that will help you on your journey with SMA | http://www.eminnea.org |
| FSMA Care Packages - specifically for type I families, supplies newly diagnosed families with car beds, sheep skin blankets, Radio Flyer Wagons, and much more. | http://www.fsma.org/FSMACommunity/NewlyDiagnosed/typeI/ |
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Other Websites of Interest |
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Website's Name & Description: |
Website's Link: |
| Boundless Playgrounds - the first national nonprofit dedicated to helping communities create extraordinary barrier-free playgrounds where children, with and without disabilities, can develop essential skills for life as they learn together through play. Founded by Amy Jaffe Barzach and her husband Peter, in memory of their son, Jonathan, who had SMA. | http://www.boundlessplaygrounds.org |
| The Jeffrey Journey - the story of how one family - with friends and family, prayer, and God's grace - rose to the challenge of caring for a dying child as they also realized the countless blessings left by their angel. | http://thejeffreyjourney.com/ |
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