leukodystrophyonline.blogspot.com

Leukodystrophy Online

Tuesday, 28 June 2011. Sorry it has been a while - I wanted to update with some new information. I have discovered the names of a couple of pieces of equipment I had heard of in passing, but could not investigate due to knowing nothing about it and therefore having no search terms. Most of my information is serendipitous in this way. The bag is connected to a tube, which has several valves which clip onto the person's feeding tube extension. During a feeding, air and stomach contents that would. For illu...

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Tuesday, 28 June 2011. Sorry it has been a while - I wanted to update with some new information. I have discovered the names of a couple of pieces of equipment I had heard of in passing, but could not investigate due to knowing nothing about it and therefore having no search terms. Most of my information is serendipitous in this way. The bag is connected to a tube, which has several valves which clip onto the person's feeding tube extension. During a feeding, air and stomach contents that would. For illu...

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Leukodystrophy Online | leukodystrophyonline.blogspot.com Reviews

https://leukodystrophyonline.blogspot.com

Tuesday, 28 June 2011. Sorry it has been a while - I wanted to update with some new information. I have discovered the names of a couple of pieces of equipment I had heard of in passing, but could not investigate due to knowing nothing about it and therefore having no search terms. Most of my information is serendipitous in this way. The bag is connected to a tube, which has several valves which clip onto the person's feeding tube extension. During a feeding, air and stomach contents that would. For illu...

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leukodystrophyonline.blogspot.com

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Leukodystrophy Online: July 2010

http://leukodystrophyonline.blogspot.com/2010_07_01_archive.html

Wednesday, 28 July 2010. More Useful Charity Links. This is a small American charity that, in some parts of the USA (mostly the heartland), gives free private flights for seriously ill patients, usually children. This would be in a situation where, for instance, the patient needs to travel long distances for medical treatment, and it would be too slow/uncomfortable for them to travel on land, and public air flight is not practical/possible/feasible. It is run entirely by volunteers. You may have heard of...

2

Leukodystrophy Online: March 2010

http://leukodystrophyonline.blogspot.com/2010_03_01_archive.html

Wednesday, 31 March 2010. Superior Disinfectants and Books about Leukodystrophy. These are some links to disinfectants that are used in the lab that may be of use to people with leukodystrophy, particularly in the winter time. Many people with leukodystrophy have to avoid infections (rife in winter, as we all know! As the outcome could be catastrophic. Http:/ www.dentisan.co.uk/index.html. Http:/ www.rmsupply.co.uk/Virkon lab products.htm. Http:/ www.amazon.co.uk/s/ref=nb sb noss? Http:/ www.amazon&#...

3

Leukodystrophy Online: Another Link - Samuel's Formula

http://leukodystrophyonline.blogspot.com/2010/07/another-link-samuels-formula.html

Tuesday, 13 July 2010. Another Link - Samuel's Formula. Http:/ www.samuelsformula.com. On the website is a detailed, and I mean detailed(! Video narrated by Sam's father about how, and why, they came up with this formula, as well as how to make your own variations of this. He also talks about why each ingredient is used and Samuel's own story, and, most importantly, he teaches you how to experiment safely until you find the nutritious and tasty formula that works for your loved one with leukodystrophy.

4

Leukodystrophy Online: January 2010

http://leukodystrophyonline.blogspot.com/2010_01_01_archive.html

Wednesday, 27 January 2010. Because of this lack of help versus need for help, you as parents may be pressured by doctors, council or even family members to put your child with leukodystrophy into a hospice hospital, home or other institution. There is nothing at all wrong with this if you and the person with leukodystrophy are happy with it, but it should be your decision and must not be forced upon you. Similarly to a hospice, there are respite care centres for people with disabilities, that can take y...

5

Leukodystrophy Online: October 2009

http://leukodystrophyonline.blogspot.com/2009_10_01_archive.html

Tuesday, 27 October 2009. Good Ways to Vary Posture. It is a good idea to change an immobile person's posture at least once every hour, day and night, not just to ease monotony, but to keep the body supple. Some different suggestions as to fun ways to position them are listed below:. Tilt in space dining chair: If you can get funding a tilt in space dining chair such as Lekkey Advance, will be useful for mealtimes, and a nice change from the wheelchair. Http:/ www.leckey.com/template.asp? Fold-out Chair-...

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pelizaeus-merzbacher.org

About PMD | PMD – Pelizaeus-Merzbacher Disease

http://pelizaeus-merzbacher.org/about

PMD – Pelizaeus-Merzbacher Disease. Information about the disorder's symptom, diagnosis, prognosis, research and potential treatment. Austin Cut For A Cure. Pelizaeus-Merzbacher disease (PMD) is named after two German physicians: Dr. Pelizaeus, who in 1885 described five boys in a single family with involuntary oscillatory eye movement ( nystagmus. Spasticity in the limbs, floppiness and very limited head and trunk control. Pelizaeus Merzbacher causes the brain to gradually lose myelin; the fat that surr...

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leukodystrophyalliance.org

World Leukodystrophy Alliance

WLA Annual General Meeting. We are a group of like-minded non-profit organizations with the goal of leveraging our resources to improve the quality of life of those effected by leukodystrophies by raising awareness and advancing treatment, care, and research. We advocate for newborn screening legislation for all leukodystrophies. We are committed to raising awareness of the leukodystrophies. We strive to provide useful information to leukodystrophy patients and their families.

leukodystrophyonline.blogspot.com

Leukodystrophy Online

Tuesday, 28 June 2011. Sorry it has been a while - I wanted to update with some new information. I have discovered the names of a couple of pieces of equipment I had heard of in passing, but could not investigate due to knowing nothing about it and therefore having no search terms. Most of my information is serendipitous in this way. The bag is connected to a tube, which has several valves which clip onto the person's feeding tube extension. During a feeding, air and stomach contents that would. For illu...

leukodystrophyresourceresearch.org

Leukodystrophy Resource and Research Organisation Inc.

Donate and help us. 4H Syndrome: Hypomyelination with Hypogonadotropic Hypogonadism and Hypodontia. 18q Syndrome with deficiency of myelin basic protein. Acute Disseminated Encephalomyelitis (ADEM). Adrenoleukodystrophy (ALD) Adrenomyeloneuropathy (AMN). Cerebral Autosomal Dominant Arteriopathy with Subcortical Infarcts and Leukoencephalopathy (CADASIL. Childhood Ataxia with diffuse Central Nervous System Hypomyelination or Vanishing White Matter Disease (CACH/VWM). How to fight Leukodystrophy. As you ex...

leukodystrophyresourceresearchorganisation.com

Leukodystrophy Resource and Research Organisation Inc.

Leukodystrophy Resource and Research Organisation Inc. Australasian Leukodystrophy Foundation Incorporated No. IA41033. How to fight Leukodystrophy. Resources & News. Join the ALD Connect Patient Portal. Webinar #1 Introduction to Adrenoleukodystrophy (ALD). Webinar #2 I Just Got Diagnosed, Now What? Webinar #3 Genetics & Reproductive Options. Webinar #4 Newborn Screening & Implementation. Webinar #5 ALD Connect’s #SAVETHEBOYS Summer Campaign. Together we can #SAVETHEBOYS. Clinical Guidelines for ALD.

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