myotubulartrust.com
Myotubular myopathy research resources
http://www.myotubulartrust.com//talk-resources.htm
The Information Point for MTM/CNM. Myotubular Myopathy Yahoo Chat Site. Standards of care for congenital muscular dystrophy. British Thoracic Society Guidelines for respiratory management of children with neuromuscular weakness. Supporting families with children who need help to breathe). Ventilation advice from Brompton Hospital. Guidance on breathing and non-invasive ventilation (NIV) for children from the age of two years old living with a neuromuscular condition. M Chatwin et al (2010). Scientific Ad...
ctrust.redsnapper.net
Organisations who can help families of children with an acquired brain injury |Brain injury information | The Children's Trust Tadworth
http://ctrust.redsnapper.net/information-library/organisations-who-can-help
The Children's Trust Tadworth. Visit The Children’s Trust main site. Register for the Brain Injury Hubs regular newsletter. Find out about all our latest news and blogs. Organisations which can help. Organisations which can help with acquired brain injury. This section offers a list of other organisations who can help. British Institute of Learning Disability. Charity committed to improving the quality of life for people with a learning disability. Independent Panel for Special Education Advice (IPSEA).
braininjuryhub.co.uk
Organisations who can help families of children with an acquired brain injury |Brain injury information | The Children's Trust Tadworth
http://www.braininjuryhub.co.uk/information-library/organisations-who-can-help
The Children's Trust Tadworth. Visit The Children’s Trust main site. Register for the Brain Injury Hubs regular newsletter. Find out about all our latest news and blogs. Organisations which can help. Organisations which can help with acquired brain injury. This section offers a list of other organisations who can help. British Institute of Learning Disability. Charity committed to improving the quality of life for people with a learning disability. Independent Panel for Special Education Advice (IPSEA).
kids-with-vents.blogspot.com
Kids with Vents: September 2010
http://kids-with-vents.blogspot.com/2010_09_01_archive.html
We are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join! Join Kids with Vents! Click to join Kids with Vents. Sunday, September 26, 2010. A Meeting of Friends! However, we finally did get to meet for a little while in the lobby, and we got some great pictures too! Lucy, Matt, and Colton. Colton and Deborah Again. We live in Tenne...
kids-with-vents.blogspot.com
Kids with Vents: Kids with Vents Facebook Group
http://kids-with-vents.blogspot.com/2011/12/kids-with-vents-facebook-group.html
We are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join! Join Kids with Vents! Click to join Kids with Vents. Wednesday, December 7, 2011. Kids with Vents Facebook Group. If your child uses a ventilator or Bipap/AVAPS, you are welcome to join us! Https:/ www.facebook.com/groups/kids.w.vents/. February 16, 2012 at 9:58 AM. HEINE M...
kids-with-vents.blogspot.com
Kids with Vents: July 2010
http://kids-with-vents.blogspot.com/2010_07_01_archive.html
We are a support and advocacy group for parents who have a child or teen who uses a ventilator full or part time (any type, including NIPPV.) Young adults who are on a vent from a childhood disorder or injury are also welcome to join! Join Kids with Vents! Click to join Kids with Vents. Saturday, July 31, 2010. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.). Josh has ROHHAD ...
lungs-for-life.blogspot.com
Anything But Ordinary...: November 2011
http://lungs-for-life.blogspot.com/2011_11_01_archive.html
It takes less than 2 minutes to sign up to become an organ donor online, you could save upto 7 lives like mine. To sign up now click here. Check us out on the ambassadors blog! I am proud to be an ambassador for the charity Breathe On UK. The rare lung disease ribbon! As designed by us! New Start supports The Wythenshawe hospital transplant program. The Willow Foundation is an adult wish foundation that granted me a wish and made my 21st very special. Live Life Then Give Life. The British Lung Foundation.
lungs-for-life.blogspot.com
Anything But Ordinary...: April 2011
http://lungs-for-life.blogspot.com/2011_04_01_archive.html
It takes less than 2 minutes to sign up to become an organ donor online, you could save upto 7 lives like mine. To sign up now click here. Check us out on the ambassadors blog! I am proud to be an ambassador for the charity Breathe On UK. The rare lung disease ribbon! As designed by us! New Start supports The Wythenshawe hospital transplant program. The Willow Foundation is an adult wish foundation that granted me a wish and made my 21st very special. Live Life Then Give Life. The British Lung Foundation.
lungs-for-life.blogspot.com
Anything But Ordinary...: February 2011
http://lungs-for-life.blogspot.com/2011_02_01_archive.html
It takes less than 2 minutes to sign up to become an organ donor online, you could save upto 7 lives like mine. To sign up now click here. Check us out on the ambassadors blog! I am proud to be an ambassador for the charity Breathe On UK. The rare lung disease ribbon! As designed by us! New Start supports The Wythenshawe hospital transplant program. The Willow Foundation is an adult wish foundation that granted me a wish and made my 21st very special. Live Life Then Give Life. The British Lung Foundation.
SOCIAL ENGAGEMENT