Dr. Bach is very well known in the SMA community. He has lots of experience working with neuromuscular patients. He's big into non-invasive ventilation, and giving patients all options before traching. Brilliant man with many book publishings. His staff at UMDNJ in Newark, NJ are great and pleased to invite SMA patients to their facility to better understand SMA, help you coordinate your childs care, vent settings, and home regimen. HIGHLY recommend going to see him, especially if planning to stay non-invasive!
Dr Schroth is in Madison, WI and she too is a highly respected SMA specialist! We have not had the pleasure of meeting her but we have spoken over the phone. She is very into SMA education, the conferences, and making sure other locations around the country understand this disease and how to better help their patients. She has produced quite a bit of literature on respiratory care in SMA. You can find some of it below by following the link.
The Pediatric Motor Disorders Research Program, under the direction of Dr. Kathryn Swoboda, is focused on a group of disorders characterized predominantly by defects in motor function, with onset in infancy or early childhood including SMA. She also has some useful information on SMA nutritional care. She probably has the most information on clinical trials, etc.