mdanightofhope.org
MDA Night of Hope MDA-ALS - MDA Night of Hope
http://mdanightofhope.org/mda-als
MDA’s Current Strides in ALS Research and Therapy Development. MDA Against ALS Fact Sheet – CLICK HERE. In 2013, MDA launched the U.S. Neuromuscular Disease Registry, layering it over the expansive clinical reach of its national clinic network. By gathering and analyzing patient data over time, MDA aims to improve survival and quality of life in ALS and other diseases, optimize clinical trial infrastructure, and leverage existing resources with those of pharmaceutical industry partners.
pattysoksofar.com
Resources | Ok, so far
https://pattysoksofar.com/resources
Ok, so far. Figuring out this ALS thing as I go. Below is a list of resources for those affected by amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. In the UK it is called motor neurone disease (MND.). Last updated February 2 20. Information about Amyotrophic Lateral Sclerosis. National Institutes of Health ALS page. University of California San Diego ALS Center. ALS Association: What is ALS? Muscular Dystrophy Association ALS overview. Mayo Clinic ALS page. April’s ALS Blog.
neuromuscular.center
Links
http://www.neuromuscular.center/links.html
A Center of Excellence of Neurology Associates of Arlington, P.A. Texas Department of Assistive and Rehabilitative Services. Washington University Neuromuscular Home Page. Leiden Muscular Dystrophy Pages. Genetics Home Reference NIH. Online Mendelian Inheritance in Man. Friedreich's Ataxia Research Alliance. United Mitochondrial Disease Foundation. Muscular Dystrophies and Congenital Myopathies. Cure CMD (Congenital Muscular Dystrophy). Jain Foundation (Dysferlin Research).
sharonhasals.com
Thanksgiving | Sharon has ALS
http://www.sharonhasals.com/2010/11/25/thanksgiving
Thoughts, reactions and learnings. Standing Up Against ALS →. November 25, 2010. It’s Thanksgiving Day, and I’m writing this at 6:30 AM. I often get up around 6:00 AM to give me an hour or so of solitary time before Sharon awakens at around 7:30 AM and the hectic morning starts. This entry was posted in History. Standing Up Against ALS →. Leave a Reply Cancel reply. You must be logged in. To post a comment. Get an email when a new post is added to this site. More to come – check later. On Death from ALS ...
sharonhasals.com
About | Sharon has ALS
http://www.sharonhasals.com/about
Thoughts, reactions and learnings. ALS is like being trapped in a tomb with no way to get out. Your mind remains sharp, and in your head everything seems perfectly normal. But when your brain tries to tell various parts of your body to do something, it’s as if no one is listening. It’s a cry in the dark. To read about the beginning of our journey. In the Interest of Full Disclosure. Get an email when a new post is added to this site. More to come – check later. Standing Up Against ALS. Tools - Early ALS.
sharonhasals.com
Death from ALS — It May Not Be as Peaceful As You’d Like | Sharon has ALS
http://www.sharonhasals.com/2011/09/29/death
Thoughts, reactions and learnings. Death from ALS — It May Not Be as Peaceful As You’d Like. September 29, 2011. If you knew Sharon, don’t read this post — it will just upset you. But if you didn’t know Sharon, and you’re just trying to understand how death comes to an ALS patient, then read on. The reality is very different. During advanced stages of ALS there are four things a caregiver is fighting:. Shortness of Breath — like the sensation of drowning, the person is gasping for air as the body r...
accessdmd.com
ACCESS DMD » Resources
http://accessdmd.com/eap-resources
Expanded Access Programs:If you are interested in learning more about expanded access programs, take a look at Expanded Access Program Information for Patients. Muscular Dystrophy Association: https:/ www.mda.org/disease/duchenne-muscular-dystrophy. And http:/ alsn.mda.org/. Parent Project Muscular Dystrophy: http:/ www.parentprojectmd.org. Download the Patient to Physician Letter. Download the Program Flyer. Here Print off and share at your DMD support groups or with other DMD patients or caregivers.
sharonhasals.com
Assisted Speech | Sharon has ALS
http://www.sharonhasals.com/assisted-speech
Thoughts, reactions and learnings. Slurred speech was one of Sharon’s early ALS symptoms. Over the course of a year her speech became harder and harder to understand as she lost control of her tongue and mouth. Tests showed that her vocal chords were just fine — she was able to make the right sounds but her mouth and tongue weren’t able to shape them into words that anyone could understand. Dedicated Assisted Speech Devices. Simple to use (when it works): just turn it on, type, and press the. Typically v...
alsdiseasealifestruggle.blogspot.com
"ALS DISEASE UNDERGROUND": Dominic Is The Youngest Person With ALS
http://alsdiseasealifestruggle.blogspot.com/2012/07/it-is-now-5-months-since-my-don-passed.html
Tuesday, July 10, 2012. Dominic Is The Youngest Person With ALS. Dominic Cumo is just eight years old, he is a darling child and most folks would say "how can he have ALS"? He is just eight years old, isn't ALS an old persons disease? ALS knows know age, creed, color or religion, it cares not if you are rich or poor, famous of infamous, it strikes like a snake fast and furious. Here is Dominic's recent story: http:/ www.mydesert.com/article/20120628/NEWS01/206270369. Subscribe to: Post Comments (Atom).
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