curecmd.org
Cure CMD | Congenital Muscular Dystrophy ResearchCure CMD is a nonprofit organization dedicated to curing Congenital Muscular Dystrophy by advancing research and empowering families.
http://www.curecmd.org/
Cure CMD is a nonprofit organization dedicated to curing Congenital Muscular Dystrophy by advancing research and empowering families.
http://www.curecmd.org/
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Cure CMD | Congenital Muscular Dystrophy Research | curecmd.org Reviews
https://curecmd.org
Cure CMD is a nonprofit organization dedicated to curing Congenital Muscular Dystrophy by advancing research and empowering families.
curecmd.org
CMD Webinar: Management of Respiratory Issues
https://www.curecmd.org/cmd-care/respiratory-management
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. A New Phase…. Sedation and Cardiopulmonary Care Guidelines. CMD Webinar: Scoliosis Management. CMD Webinar: Living with CMD. Studies & Trials. CMD Comparative Outcome Measure Study, 2010-2015. Featured Scientist – Dr. Ronald Cohn. TLC Background and Goals. TLC Expectations and Logistics. Building a TLC Team. Past and Future TLC Clinics. Letters of Endorsement and Sponsors. A group of...
CMD Care
https://www.curecmd.org/cmd-care
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. A New Phase…. Sedation and Cardiopulmonary Care Guidelines. CMD Webinar: Scoliosis Management. CMD Webinar: Living with CMD. Studies & Trials. CMD Comparative Outcome Measure Study, 2010-2015. Featured Scientist – Dr. Ronald Cohn. TLC Background and Goals. TLC Expectations and Logistics. Building a TLC Team. Past and Future TLC Clinics. Letters of Endorsement and Sponsors. French Can...
Adapted Vehicles and Driving
https://www.curecmd.org/cmd-care/equipment/adapted-vehicles-and-driving
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. A New Phase…. Sedation and Cardiopulmonary Care Guidelines. CMD Webinar: Scoliosis Management. CMD Webinar: Living with CMD. Studies & Trials. CMD Comparative Outcome Measure Study, 2010-2015. Featured Scientist – Dr. Ronald Cohn. TLC Background and Goals. TLC Expectations and Logistics. Building a TLC Team. Past and Future TLC Clinics. Letters of Endorsement and Sponsors. A group of...
Clinic Partners
https://www.curecmd.org/home/clinic-partners
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. A New Phase…. Sedation and Cardiopulmonary Care Guidelines. CMD Webinar: Scoliosis Management. CMD Webinar: Living with CMD. Studies & Trials. CMD Comparative Outcome Measure Study, 2010-2015. Featured Scientist – Dr. Ronald Cohn. TLC Background and Goals. TLC Expectations and Logistics. Building a TLC Team. Past and Future TLC Clinics. Letters of Endorsement and Sponsors. This websi...
Omigapil pK Study Slated for 2012
https://www.curecmd.org/archives/4526
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. A New Phase…. Sedation and Cardiopulmonary Care Guidelines. CMD Webinar: Scoliosis Management. CMD Webinar: Living with CMD. Studies & Trials. CMD Comparative Outcome Measure Study, 2010-2015. Featured Scientist – Dr. Ronald Cohn. TLC Background and Goals. TLC Expectations and Logistics. Building a TLC Team. Past and Future TLC Clinics. Letters of Endorsement and Sponsors. A pK or ph...
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17
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...
Caring for KAI KAI: Short update
http://caringforkaikai.blogspot.com/2010/10/short-update.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Tuesday, October 26, 2010. Just a quick update. We are meeting with a lawyer about the foundation tomorrow. I am so excited to get this rolling. Also soon anything to do with the foundation with be posted on a new site. As soon as I am finished getting it set up I will do another update and include details of Kai's recent Shriner's visit. Subscribe to: Post Comments (Atom). View my complete profile.
Caring for KAI KAI: August 2009
http://caringforkaikai.blogspot.com/2009_08_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Saturday, August 29, 2009. It has been a very emotional week. With Kai's first day of Kindergarten and Ainsley Mae's baptism I am an emotional wreck! I will write more details later but thought I would post some pictures from our big week. Saturday, August 22, 2009. Not that he would be in it all of the time, just during sacrament meeting, and maybe sometimes. I will be sure to post some first day photo's. Ainsley s...
Caring for KAI KAI: October 2010
http://caringforkaikai.blogspot.com/2010_10_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Tuesday, October 26, 2010. Just a quick update. We are meeting with a lawyer about the foundation tomorrow. I am so excited to get this rolling. Also soon anything to do with the foundation with be posted on a new site. As soon as I am finished getting it set up I will do another update and include details of Kai's recent Shriner's visit. Subscribe to: Posts (Atom). View my complete profile. Powered by web statistics.
Caring for KAI KAI: August 2010
http://caringforkaikai.blogspot.com/2010_08_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Tuesday, August 24, 2010. Sorry for the poor quality of the picture, my camera wouldn't cooperate.). So what better day to start posting again than the first day of school? July 10th was a very special day for Kai and our family. Miller Motor Sportspark gave Kai the opportunity to sit in his first racecar and spend time with the drivers, he was in Heaven! Subscribe to: Posts (Atom). View my complete profile.
Caring for KAI KAI: March 2011
http://caringforkaikai.blogspot.com/2011_03_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Tuesday, March 8, 2011. This is what Kai brought home from school today.It was everything that I could do to not bust up laughing! Subscribe to: Posts (Atom). View my complete profile. Ullrich Congenital Muscular Dystrophy. Cure Congenital Muscular Dystrophy. Powered by web statistics. FEEDJIT Live Traffic Map. FEEDJIT Live Traffic Feed. Simple template. Powered by Blogger.
Caring for KAI KAI: October 2009
http://caringforkaikai.blogspot.com/2009_10_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Thursday, October 1, 2009. My brain is not wanting to think right now, so I am just going to post a few pictures and you can guess what happened before Kai went to bed tonight. Five minutes BEFORE bedtime. Five minutes after bedtime. Two teeth in one night! My baby is getting so big, I hate it! Oops, guess no need for guessing, oh well. Have a good night and I will try to update more about our week tomorrow.
Caring for KAI KAI: December 2009
http://caringforkaikai.blogspot.com/2009_12_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Friday, December 25, 2009. I meant to update long before now, really I did, but due to the crazy holiday season it hasn't happened until now. I know some have been waiting to hear how our trip to Shriners went. Please forgive me for waiting so long. To start with the most anticipated news, Shriners was AWESOME! That really helps to boost morale, especially when wheelchairs can run thousands of dollars!
Caring for KAI KAI: May 2010
http://caringforkaikai.blogspot.com/2010_05_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Sunday, May 23, 2010. Where the boat leaves from. Well I just spent the last 30 minutes doing an awesome, long overdue post. That I lost while sitting here in the airport. Jeremy and I are headed to the Bahamas, and I promise to redo that long overdue post when we get home. So until then I'm headed to where the boat leaves from! Subscribe to: Posts (Atom). View my complete profile. Ullrich Congenital Muscular Dystrophy.
Caring for KAI KAI: September 2010
http://caringforkaikai.blogspot.com/2010_09_01_archive.html
Caring for KAI KAI. MOST PEOPLE LIVE THEIR LIVES, I INTEND TO LEAD MINE" - ANONYMOUS. Friday, September 24, 2010. Forget yourself and go to work! A little background on this quote first. When President Hinckley was a young man he was serving a mission for our church in England. He felt as if he wasn't doing any good in being there. He shared these thoughts with his father in a letter who in turn replied, "Forget yourself and go to work! Tuesday, September 21, 2010. I finally was able to get the pictures ...
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Cure CMD | Congenital Muscular Dystrophy Research
Cure CMD provides Congenital Muscular Dystrophy resources, information, and support to families, doctors, and researchers. CMD Webinar: Living with CMD. CMD Webinar: Scoliosis Management. CMD Webinar: Management of Respiratory Issues. Breathing Issues: In Depth Tutorial. Breathing Issues: Medical Literature. Breathing Issues: Internet Resources. Sedation and Cardiopulmonary Care Guidelines. CMD Care Videos: Breathing. CMD Care Videos: G-Tube. Adapted Vehicles and Driving. Manual v. Power Wheelchairs.
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