If your child has been newly diagnosed with SMA, please read the below information. We know this is a confusing and overwhelming time. While there are not many choices with an SMA diagnosis, there are some. There is no one way or a right way and all decisions are difficult. The best action you can take is to inform yourself with as much information as you can so that you can make the best decisions for your family. If you have been given a Type 1 SMA diagnosis, time is critical. Nothing is guaranteed, but research shows the earlier intervention is made, the better chance of lengthening lifespan of the diagnosed. There are now clinical trials available – be sure to look into them asap for best results.
- Journal of Child Neurology: Consensus Statement for Standard of Care for SMA – Family Guide
- Journal of Child Neurology: Consensus Statement for Standard of Care for SMA – Full Guide
- Journal of Child Neurology: Laparoscopic Nissen Fundoplication During Gastrostomy Tube Placement and Noninvasive Ventilation May Improve Survival in Type I and Severe Type II Spinal Muscular Atrophy
- FSMA: SMA Type 1 Caring Choices
- FSMA: Respiratory Care for Children with SMA
- University of Utah: Respiratory Care Video
- Gwendolyn's Machines
- Gwendolyn's Power and Backup Power
- Gwendolyn's Respiratory Routine
- Type 1 Wheelchair and Customizations
Research Clinical Trials >>
There are now several clinical trials open around the world. Many are having remarkable impacts. They have specific guidelines and not all will fit into them, so contacting each program as soon as your child is diagnosed is best. Learn more HERE.
Join >>
International SMA Patient Registry to be eligible for latest clinical trials
SMA Specialists >>
One of the most important decisions we made was to seek out SMA experts to help us in our decision-making process. There are only a handful of doctors who specialize in children with SMA in the United States, but their knowledge and experience can change the outcome of your child’s life. Do not simply make an appointment for two or three months later – call or email doctors directly, immediately. If you cannot travel to see them in person, many are willing to work with your local hospital. The nuances of treating children with SMA are unique and often contrary to what is standard hospital protocol. It is important that you speak with them, be honest about what symptoms your child is presenting, and ask questions.
Apply for Support from the Gwendolyn Strong Foundation >>
Once you get your feet under you again and your child's immediate medical needs are being met, we have several programs to help families. Learn more and apply here.
- Project Mariposa: iPad technology grants
- SMA Community Grants: Financial assistance grants
- SayHi! AAC: FREE communication app we built available in the iTunes store
Additional SMA Resources >>
- There are several private family support groups on Facebook. Contact us and we can get you linked in with those. Other SMA parents are often the ones who helped us navigate life with SMA more than doctors
- SMASpace
- Fight SMA
- Families of SMA
- InsideSMA
- SMA Medical Supply
Other Resources >>
- Apply for Grants: This is an incredible list of resource grants specifically for families with medical and/or special needs. Tons of organizations and support
- RARE Toolkits: Great educational educational resources that provide critical information on various topics within the rare disease landscape