ADVOCACY

Unfortunatley you might find yourself in a postition where you will have to advocate strongly for your child. The wonderful human rights and especially child rights advocates June Callwood said, "Help should be defined by those that need it, not by those that delver it." I suggest leaving a paper trail at all times. Always do your research and back up your argument with up to date hard copy information. I also suggest reading a book titled "How Doctors Think" by Dr. Jerome Groopman http://www.jeromegroopman.com/We have to work with the medical establishment so we therefore have to educate them and open their eyes to the fact that we want to keep our children at home and that there are ways of doing this so that our families and our children can experience the highest and best quality of life. For more information you can read the article I wrote on Advocacy under the In The News Tab or the following link:Self_advocacy_ tool_e.pdf

Bed and Breakfast (my mother's)

Victoria B.C. Bed and Breakfast

http://www.fisherhousevictoria.com/

CAMPING (my father's)

Mayne Island Camping

http://www.mayneisle.com/camp/

CLINICAL TRIALS

http://www.projectcuresma.org/

http://www.nih.gov

http://www.chu-sainte-justine.org

DOCTORS LINKS

http://www.doctorbach.com/

John R. Bach M.D. Professor of Neurosciences Department: Physical Medicine and Rehabilitation Division: Physical Medicine & Rehabilitation

Associate Professor

University of Wisconsin at Madison

\Hospital-

Clinical Science Centre

Office Suite K4/942

Office Phone: (608) 263-8555

Email: mschroth@wisc.edu

Kathryn J. Swoboda, MD

http://medicine.utah.edu/neurology/research/swoboda/

Associate Professor, Neurology and Pediatrics Diplomate, American Board of Medical Genetics Director, Pediatric Motor Disorders Research Program University of Utah School of Medicine 50 N. Medical Drive, Rm 3R210 Salt Lake City, Utah 84132, USA

Telephone: 801-585-1676 Fax: 801-587-9346 Email: swoboda@genetics.utah.edu

Below is a link to Healthcare professionals from throughout the US and the world that have been trained by the Center For Ventilator Management Alternatives in the use of noninvasive ventilation techniques. 

www.theuniversityhospital.com/ventilation/html/contactus/resources.htm

FRIENDS OF SHIRA'S LINKS

http://www.caringbridge.org/md/callie/

http://www.our-sma-angels.com/grace

http://www.our-sma-agels.com/Charlie

http://www.our-sma-angels.com/ethan

http://www.maloriefox.com/

http://www.our-sma-angels.com/jenna

http://www.our-sma-angels.com/lily/

http://www.hopeforemily.com/

http://www.fightsma.org/fightermom/forums/index.php?automod ule=blog&blogid=3&

http://www.allrloveforsky.blogspot.com/

http://www.our-sma-angels.com/elizabeth/

http://www.caringbridge.org/visit/daniel_lee

http://www.our-sma-angels.com/Skylar

http://www.our-sma-angels.com/b4sma

INSPIRATION

http://www.cbc.ca/lifeandtimes/callwood.html

http://www.teamhoyt.com/

SHIRA'S VIDEOS

http://www.youtube.com/Shira2

SPINAL MUSCULAR ATROPHY SITES

http://medicine.utah.edu/neurology/research/swoboda/

http://www.doctorbach.com

http://www.smasupport.com/