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The Information Point for Centronuclear and Myotubular Myopathy

Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms, x-linked. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life. The conditions are one of several different types of congenital myopathy. The word 'Myopathy' is derived from the Greek language - the word ' Myo. Means muscle and the word ' Pathy. How The Information Point began.

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The Information Point for Centronuclear and Myotubular Myopathy | centronuclear.org.uk Reviews

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Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms, x-linked. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life. The conditions are one of several different types of congenital myopathy. The word 'Myopathy' is derived from the Greek language - the word ' Myo. Means muscle and the word ' Pathy. How The Information Point began.

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3 The Information Point for Centronuclear and Myotubular Myopathy

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autosomal recessive,and autosomal dominant,understanding myopathies

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The Information Point for Centronuclear and Myotubular Myopathy | centronuclear.org.uk Reviews

https://centronuclear.org.uk

Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms, x-linked. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life. The conditions are one of several different types of congenital myopathy. The word 'Myopathy' is derived from the Greek language - the word ' Myo. Means muscle and the word ' Pathy. How The Information Point began.

INTERNAL PAGES

centronuclear.org.uk

1

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk/theinformationpoint/pages/resources/myopathy.html

Myopathies are neuromuscular diseases which cause muscle fibres not to function, so resulting in muscular weakness. There are many types of myopathy - this website deals primarily with centronuclear and myotubular myopathy, however, if you have stumbled across these pages wanting to read about another type of myopathy, the information below may be of assistance. The National Institute of Neurological Disorders and Stroke. Severity of problems and the degree to which the condition worsens over time varies...

2

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk/theinformationpoint/pages/our_history/our_history.html

The Information Point for Centronuclear and Myotubular Myopathy was established in March 2001 by me - my name is Toni. My father and I were diagnosed with autosomal dominant centronuclear myopathy (CNM) following muscle biopsy in 1998. Toni and Mikes story. Also around this time I took a night school class to learn how to design websites. My end of course project required me to produce some web pages, I did mine about the condition and that it is how the Information Point began.

3

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk/theinformationpoint/pages/the_big_sunflower_project.html

The Big Sunflower Project. The Big Sunflower Project aims to raise awareness of the rare neuromuscular condtions known as centronuclear and myotubular myopathy by asking people to grow a sunflower. Our aim is to get as many people as possible growing sunflowers. Participants can obtain their own seeds or request seeds from The Information Point by emailing their name and address. With the subject line 'The Big Sunflower Project'. And share with us. Sharing the photos helps The Information Point raise awa...

4

Our World

http://centronuclear.org.uk/the_big_sunflower_project.html

The Big Sunflower Project. 2016 is the sixth year of The Big Sunflower Project. The aim of the project is to raise awareness of centronuclear and myotubular myopathy by asking people to grow a sunflower, with seeds being given away in return for photos of the sunflowers, which are displayed on The Information Point website, in newsletters and on social media. This year The Big Sunflower Project has been made possible because of seed d. Onations from the following organsiations:. The Information Point for...

5

The Information Point for Centronuclear and Myotubular Myopathy

http://centronuclear.org.uk/theinformationpoint/pages/information/information_adults/adults.html

Whether you have been diagnosed with an adult onset form of centronuclear or myotubular myopathy or are in transitory period from being cared for as a child to making your way in the world as an adult, this page has been set up with you in mind. If you have recently been diagnosed with centronuclear or myotubular myopathy the following pages on this website may be of interest. Stories of affected adults. Further information of a more general nature can be found below. The Access to Work Scheme. The chari...

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THE HAGGARD FAMILY: Day 4: Now

http://haggardfamily.blogspot.com/2014/10/day-4-now.html

Saturday, October 4, 2014. 8206; CaptureyourGrief‬. Who am I now? Full Project Details - http:/ carlymarieprojectheal.com/2014/09/capture-your-grief-2014.html. Posted by Cheryl Haggard. Subscribe to: Post Comments (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! Michael and Cheryl Haggard. NILMDTS video of Maddux. Http:/ www.youtube.com/watch? Christmas Photo - 2007. In Honor of Maddux:. Finding my new normal:. The Kyle David Miller Foundation.

haggardfamily.blogspot.com

THE HAGGARD FAMILY: May 2011

http://haggardfamily.blogspot.com/2011_05_01_archive.html

Wednesday, May 25, 2011. Photos of dead baby haunts mother:. Http:/ drdrew.blogs.cnn.com/2011/05/23/photos-of-dead-baby-haunts-mother/. Dear Baby Joey's mother,. Please don't let your anger guide you during this time. In Hope and Healing,. Posted by Cheryl Haggard. Links to this post. Subscribe to: Posts (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! Michael and Cheryl Haggard. NILMDTS video of Maddux. Http:/ www.youtube.com/watch? Here are our...

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THE HAGGARD FAMILY: Baylor or Bust...

http://haggardfamily.blogspot.com/2012/08/baylor-or-bust.html

Tuesday, August 21, 2012. Got the boy off to college last week. Can't believe it has been exactly one week ago today, he and I were on our way to Texas. My, how time flies. Parents, don't blink. Chase getting his book order. More shopping in Waco. Chase's home away from home. Natalie and I decorated his car. People on the road HAD to know where we were headed! Posted by Cheryl Haggard. Subscribe to: Post Comments (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! The In...

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THE HAGGARD FAMILY: Day 5: Journal

http://haggardfamily.blogspot.com/2014/10/day-5-journal.html

Sunday, October 5, 2014. My life has been an open book since Maddux died, and the creation of Now I Lay Me Down To Sleep. I wanted other parents to know they were not alone. It was important for me to share my story with those who would listen, and I in turn asked other parents about their loss. One thing I had that they didn't? Beautiful photographs. I could see it in their eyes whe . Here is just a bit of what she wrote: "Dear Maddux, Today I stumbled across this journal while I was in the office. ...

haggardfamily.blogspot.com

THE HAGGARD FAMILY: April 2012

http://haggardfamily.blogspot.com/2012_04_01_archive.html

Thursday, April 19, 2012. Now I Lay Me Down to Sleep Newsletter: APRIL 2012. NILMDTS April 2012 Newsletter. Posted by Cheryl Haggard. Links to this post. National Honor Society Induction. Congratulations to my son Chase. Hard work has paid off. Posted by Cheryl Haggard. Links to this post. Tuesday, April 17, 2012. Posted by Cheryl Haggard. Links to this post. Monday, April 16, 2012. Posted by Cheryl Haggard. Links to this post. Posted by Cheryl Haggard. Links to this post. My Beauty, Anna. The mention of...

haggardfamily.blogspot.com

THE HAGGARD FAMILY: September 2011

http://haggardfamily.blogspot.com/2011_09_01_archive.html

Friday, September 16, 2011. I ♥ NY! Posted by Cheryl Haggard. Links to this post. Subscribe to: Posts (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! Michael and Cheryl Haggard. And my name is Maddux. I live in heaven now. I was born February 4th, 2005, and I died on February 10th, 2005. My family misses me very much. Ask about me sometime, and see how my mommy's eyes light up. NILMDTS video of Maddux. Http:/ www.youtube.com/watch? Hi, I'm Jeter...

haggardfamily.blogspot.com

THE HAGGARD FAMILY: A Junior and a Sevie...

http://haggardfamily.blogspot.com/2012/08/a-junior-and-sevie.html

Tuesday, August 21, 2012. A Junior and a Sevie. First day for Anna and Natalie. Anna got her drivers license a couple weeks ago and this. Is her new 'ride.'. Posted by Cheryl Haggard. Subscribe to: Post Comments (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! Michael and Cheryl Haggard. NILMDTS video of Maddux. Http:/ www.youtube.com/watch? Christmas Photo - 2007. In Honor of Maddux:. Finding my new normal:. The Kyle David Miller Foundation.

haggardfamily.blogspot.com

THE HAGGARD FAMILY: October 2013

http://haggardfamily.blogspot.com/2013_10_01_archive.html

Monday, October 28, 2013. Guess who got accepted to KU? Posted by Cheryl Haggard. Links to this post. Friday, October 25, 2013. Just a couple of Anna's Senior Pictures. Isn't she beautiful. Thank you to Dominique of Fall Child Photography in Colorado for photographing her and having a lot of fun with the locations! Posted by Cheryl Haggard. Links to this post. Subscribe to: Posts (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! In Honor of Maddux:.

haggardfamily.blogspot.com

THE HAGGARD FAMILY: Day 1: Sunrise

http://haggardfamily.blogspot.com/2014/10/day-1-sunrise.html

Wednesday, October 1, 2014. First time participating in this event hosted by CarlyMarie. This was taken in Evergreen, Colorado at 7:02am. #CAPTUREYOURGRIEF. Posted by Cheryl Haggard. Subscribe to: Post Comments (Atom). Grab NILMDTS for your Blog. Colorado Time.I'm sure it's happy hour somewhere! YOU HAVE BEEN WARNED! Michael and Cheryl Haggard. NILMDTS video of Maddux. Http:/ www.youtube.com/watch? Christmas Photo - 2007. In Honor of Maddux:. Finding my new normal:. The Kyle David Miller Foundation.

bcneural.org.uk

BCNA Support for you

http://www.bcneural.org.uk/support.html

What is a Neurological Condition? Intermittent disorders, such as epilepsy, migraine and other headache problems;. Progressive long-term condition, such as Parkinson's, multiple sclerosis (MS) and dementia;. Life-threatening acute conditions, such as stroke, meningitis, encephalitis, status epilepticus, acute inflammatory neuropathies, traumatic brain injury and subarachnoid haemorrhage;. Hereditary neurological diseases such as Huntington's. They are very common in the UK:. Please note that we currently...

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centronuclear.org.uk

The Information Point for Centronuclear and Myotubular Myopathy

Centronuclear and myotubular myopathy are rare inherited neuromuscular diseases of which there are three forms, x-linked. The conditions manifest themselves as defects in the cell structure of voluntary muscles, causing low muscle tone and affecting children and adults at various stages of life. The conditions are one of several different types of congenital myopathy. The word 'Myopathy' is derived from the Greek language - the word ' Myo. Means muscle and the word ' Pathy. How The Information Point began.

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