Amyotrophic Lateral Sclerosis (ALS)

If we have a purpose in life beyond being a cog in the human machine, mine is to help inspire people and that's pretty cool. I would like to motivate the world - Steve Gleason

Amyotrophic Lateral Sclerosis (ALS)
Amyotrophic Lateral Sclerosis (ALS)

image by: artemon91

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The Good Short Life

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But it is not a kind disease. The nerves and muscles pulse and twitch, and progressively, they die. From the outside, it looks like the ripple of piano keys in the muscles under my skin. From the inside, it feels like anxious butterflies, trying to get out. It starts in the hands and feet and works its way up and in, or it begins in the muscles of the mouth and throat and chest and abdomen, and works its way down and out. The second way is called bulbar, and that’s the way it is with me. We don’t live as long, because it affects our ability to breathe early on, and it just gets worse.

At the moment,…

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 The Good Short Life

I sometimes call it Lou, in his honor, and because the familiar feels less threatening. But it is not a kind disease.

ALS Worldwide

ALS WORLDWIDE is a non-profit organization that provides support to ALS families internationally through scientific research interpretation, individual patient advocacy and community activism.

Project ALS

Project A.L.S. identifies and funds the most promising scientific research that will lead to the first effective treatments and a cure for ALS. The new paradigm for brain disease research, Project A.L.S. recruits the world’s best scientists and doctors to work together—rationally and aggressively—toward a better understanding of the ALS disease process and, in parallel, better therapeutic strategies.

ALS Assistive Technology

This blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.

ALS Association

ALS Association: What We Do Established in 1985, The ALS Association is the only national non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

ALS Canada

ALS Canada is the only national voluntary health organization dedicated solely to the fight against ALS and support individuals living with ALS.

ALS Chronicle

This blog is here to chronicle the story of my wife's and my family's battle with ALS - Lou Gehrig's Disease. Symptoms, Diagnosis, Paths we have followed and experiences we have had will all be addressed. You can contribute to curing this disease here.

ALS Foundation for Life

We at the ALS Foundation for Life are optimistic for the day when a cure or prevention for ALS is discovered and introduced into society, but are equally aware that we cannot sit back idly awaiting scientific research and FDA approvals.

ALS Hope Foundation

Dedicated to the care and cure of people with Lou Gehrig's Disease.


We are the #1 nonprofit biotechnology organization dedicated to developing effective treatments for ALS.

Compassionate Care ALS

The mission of Compassionate Care ALS (CCALS) is to model compassion to those affected by ALS by providing educational and legal resources, respite opportunities, instruction and guidance, subsidy of living aids and assistance, and intimate dialogue with patients and their caregivers, families, and friends.


After he is diagnosed with ALS, former professional football player Steve Gleason begins making a video diary for his unborn son, as he, his wife, and their friends and family work to raise money for ALS patients as his disease progresses - IMDb


HealingALS is committed to its mission to educate people diagnosed with ALS (PALS) and their families about holistic protocols for ALS that can slow, stop and even reverse the progression of ALS.

International Alliance of ALS/MND Associations

The International Alliance of ALS/MND Associations was founded in 1992 to provide an international community for individual ALS/MND associations from around the world. Our vision is to engage with our members, prospective members and other organisations to share resources globally, advance awareness and support people with ALS/MND worldwide…

Journey On With Royce

My name is Royce Cowan and I am a 30 year old ALS patient who was diagnosed at age 27.

Lou Gehrig

Of all the players in baseball history, none possessed as much talent and humility as Lou Gehrig. His accomplishments on the field made him an authentic American hero, and his tragic early death made him a legend.

MND Australia

MND Australia works in collaboration with the state MND associations to help Australians impacted by MND live better for longer. We provide trusted information and raise awareness to promote the best possible care and support. We play an authoritative role in shaping government policies to empower the MND community.

MND New Zealand

Our MND Association is a small not for profit organisation whose main purpose is to help support people with motor neurone disease and their carers. We have fieldworkers around the country who provide information, advocacy and emotional support and help people have access to the right health services at the right time. This website aims to provide useful material about the things that people affected by MND are likely to want to know, like information on MND, the latest research on MND, and where to go for help and support.

National ALS Registry

The National ALS Registry is a congressionally mandated registry for persons in the U.S. with ALS. It is the only population-based registry in the U.S. that collects information to help scientists learn more about who gets ALS and its causes.


The mission of the Northeast ALS Consortium (NEALS) is to rapidly translate scientific advances into clinical research and new treatments for people with Amyotrophic Lateral Sclerosis (ALS) and motor neuron disease.

Packard Center

The Packard Center for ALS Research at Johns Hopkins enables the world’s best ALS scientists to collaborate and access funding so that they may continue work to rapidly develop new treatments and find a cure for ALS, also known as Lou Gehrig’s disease.

Richard Is Living With ALS

My name is Richard McBride and I have ALS. I was diagnosed in November 2012 at 57 years of age. This blog will cover my journey. Just remember, I am living with ALS, not dying from it.

A Life Story Foundation

A Life Story Foundation’s mission is to raise awareness and create action to discover effective treatments, and ultimately a cure for ALS.

Bo Stern

I am passionate about helping find a cure for ALS, a disease my husband has been fighting since 2011 (I’m not actually helping find a cure, rather I’m helping find money to help find a cure…I’m not allowed to go near science.)

Drinking Through a Straw – My Journey with ALS

Chronicling my ALS Journey.

Kevin Lives with ALS

My name is Kevin Taylor. I live in Draper, Utah with my sweet wife, Gerrí. We have been married for 41 years. I'm 64 and healthy in every way with one exception. I have Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease. I was diagnosed with ALS in May, 2012. It seems like this might be a good way to share my experience with family and friends.


MDA's Neuromuscular Disease Registry is helping optimize clinical outcomes and evaluate best practices in ALS care. It complements the CDC's ATSDR National ALS Registry, which focuses on the causes of ALS.

Patrick's Story

My Journey With ALS


You may find comfort in sharing your concerns in a support group with others who have ALS. Your family members and friends helping with your care also may benefit from a support group of others who care for people with amyotrophic lateral sclerosis. Find support groups in your area by talking to your doctor or by contacting the ALS Association.

National Institute of Neurological Disorders and Stroke

In searching for the cause of ALS, researchers are also studying the role of environmental factors such as exposure to toxic or infectious agents, as well as physical trauma or behavioral and occupational factors. For example, studies of populations of military personnel who were deployed to the Gulf region during the 1991 war show that those veterans were more likely to develop ALS compared to military personnel who were not in the region.

ALS Advocacy

Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis. Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

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