Here are some MSWord/PDFs and links to helpful documentation on SMA and things to know for Disabled people in Canada Including the supplements we give Jessika, some other parents' web sites and info on some Dr's specializing in this field and current research projects to find a cure. See very bottom for Dr Bach's site
Some links to the sites we are visiting to gather info and suport:
http://asonginthisworld.com/ This is a site by a parent of a SMA type 1 child who is now 5yrs old, named Shira. The site is full of helpful info such as her daily routine and diet, pictures of her during feeding and with her Bi-pap machine. Also a Protocol for quickly passing on all information on the daily care of Shira.
http://www.smaspace.com/ This site is actually our new favorite, its american also but has all the great stuff from the SMA community site and all the helpful recources such as equipment sharing and buying like the FSMA site.
http://www.curesma.ca/ This is the Canadian site for SMA (not as much help as the US site) but they did send us a big info pack with their news letters http://www.curesma.ca/newsletter.shtml called northern directions, fundraising and stories as well as helpful advice.
http://www.fsma.org/ this is the USA site extremly helpful and they sent us a care package containing some useful things for jessika such as a sheep skin blanket, more info and toys. http://www.fsma.org/Research/Publications/ this is their news letter ALL the latest reasearch updates and drug trials.
http://www.smacommunity.org/ this is a link to a site very simular to facebook for anyone affected by SMA all types and all friends and family members are welcome. We love it and have gained most of our knowledge from real people in real situations on here.
http://www.waterwaybabies.com/ this is the site where we found and ordered Jessika's flotation ring
The next SMA conference for 2011 http://www.fsma.org/FSMACommunity/Conference/
usually held in different locations a 3 day event where we can meet other people in person with SMA since only 2 live in a 50 mile radious of where we live, also leading reasearchers and scientists will be on hand with Q&A lectures and other workshops to help us prepare for the thoguh road ahead.
