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Connect with Families of SMA:

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Newly Diagnosed

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Dear Friend,

The diagnosis of Spinal Muscular Atrophy can be confusing, scary, frustrating, pretty much the whole gamut of emotions… but you are not alone.  You are now part of Families of SMA, a network of families, researchers, clinicians and other professionals who are determined to make a difference.

Families of SMA is here for you at whatever level you need. We hope to provide you with some information that will help you navigate through life with SMA. Please e-mail us at infopack@fsma.org with your mailing address, or call the FSMA National Office at (800) 886-1762, and we will immediately send you a packet of information on SMA.

FSMA is here to help provide you with information, to connect you with families and resources, and to fund the research that will lead us to a treatment and cure for SMA.  For more information on FSMA, click here.

These are some links to information that are critical for newly diagnosed families (click on link for information):

- Understanding SMA Booklet

- A New Booklet on Caring Choices for Parents of Infants Newly Diagnosed with SMA Type I:

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- Genetics Information

- Respiratory Choices for SMA Families

- Palliative Care  

- Equipment Pool 

- SMA Community Connections

- Current Clinical Trials 

Patient Registry

- Family Support and Research Publications from Families of SMA

- Information on our Annual SMA Conference, as well as our Newly Diagnosed Scholarship Program


 

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