Here's a link to the Jennifer Trust for Spinal Muscular Atrophy. The JTSMA is the only British organisation dedicated to providing support, care, information and the funding of research into SMA.
This is the US equivalent: Families of Spinal Muscular Atrophy
Another support organisation is SMA Support Inc.
These sites are very technical but we found them to be useful to varying degrees when we were trying to find out more about SMARD and SMA.
Review of SMA literature in 2005: SMA Foundation
This is the site that the medics use themselves for information on neuromuscular diseases - Washington University Neuromuscular Disease Center
The website for the ISNO Dutch Neuromuscular Research Support Centre has some useful papers on SMA, although some are only available in Dutch...
Dr. Bach is a world leader on non-invasive respiratory support for neuromuscular diseases helping many children and adults with SMA - Dr. Bach's home page
This is a presentation on SMA that discusses Dr. Bach's research Spinal Muscular Atrophy: Ethical and Technologic Challenges
Here's a US site with lots of useful information and links on SMA Miracle for Madison and Friends. The Related SMA sites is especially useful.
Here are a few sites that describe the basics of hereditary genetics, which is important when trying to understand the implications of being a SMARD or SMA carrier. There are implications for the siblings of carriers but it's important to note that for SMARD, the partners of siblings cannot be tested.
The SMARD page on the Jennifer Trust has a really good summary, which we found really useful for ourselves and for our families and friends.
Wikipedia's description of Mendelian inheritance
A simple summary of the history and basics of Mendel's genetics
We've added a few links to Amazon for some books that look pretty good at describing the basics of genetics. If anyone happens to buy a book via this link then we make a small amount of money for the referral and of course it would all go to the Jennifer Trust.