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Families of SMA is a resource for unbiased support. We do not advocate any specific choices or decisions; we are here for anyone who wishes to talk through their options. All choices related to SMA are highly personal and need to reflect your own personal values. As caring parents and professionals, we can offer support and understanding when it is most needed. By phone and networking, Families of SMA staff and members are here for you. We provide invaluable support and services to patients and families affected by SMA. These include medical information and equipment, local community support through our vast volunteer network, regular publications, and an annual conference. We provide our members a subscription to Directions, our newsletter, and Compass, our publication dedicated to SMA research news and progress. Directions contains information on daily living, letters from families, upcoming events, articles by doctors and researchers, and other resources. Every year Families of SMA sponsors a conference to bring together the leading SMA researchers and clinicians, companies and our family members. The main goals of the conference are:
- To allow networking between researchers involved in and families affected by SMA;
- To educate professionals on the latest research advancements;
- To educate families on the basics of the disease and the latest research and medical results.
This is the largest conference in the world for those affected by SMA, and also for those involved in providing support and care for SMA patients. There is no other program like this for those affected by SMA in the world. The aspect of interactions between the researchers and families at one conference is extremely special. The annual conference also provides our children an opportunity to make new friends and have a great time. Because Families of SMA understands the financial hardship of living with SMA, the organization maintains an equipment pool, which is available, free of charge, to members of Families of SMA.
We are available if you want to talk with others who understand. Also, Families of SMA has 24 Local Chapters as well as networking programs that link families together for mutual support. In addition, we refer families to appropriate resources for assistance and support.
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