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Consensus Statement for Standard Of Care In Spinal Muscular Atrophy http://jcn.sagepub.com/cgi/content/abstract/22/8/1027 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 |  |
| Practice Phone: | | Voice: | 973-972-2802 | | Fax: | 973-972-2825 |
Email: bachjr@umdnj.edu | | Practice Address: | 90 Bergen Street
DOC 3100
Newark NJ 07103 (Essex)
| | Hospital Affiliations: | UMDNJ - University Hospital, Newark |
Below is a link to Healthcare professionals from throughout the US, Canada and the world that have been trained by Dr. Bach and the Center For
Ventilator Management Alternatives in the use of noninvasive ventilation techniques. www.theuniversityhospital.com/ventilation/html/contactus/resources.htm Dr. Mary K Schroth 
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 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.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/ MUSIC THERAPY
http://www.victoriamusictherapy.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/ http://www.fsma.org/canada http://www.fightsma.org/ http://www.projectcuresma.org/ http://www.mda.org/disease/sma1.html#special http://www.smaspace.com |
