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
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,…
Resources
ALS Drug Study Signals Progress Toward Treatment for Deadly Disease
Patients with amyotrophic lateral sclerosis, or Lou Gehrig’s disease, who took an experimental drug kept the ability to walk, breathe and do other functions about six weeks longer than subjects who took a placebo in a recent trial—the latest sign of progress in finding new treatments for the deadly disease.
Experimental drug for ALS, dreamed up in a dorm room, offers patients glimmer of hope
An experimental drug for amyotrophic lateral sclerosis, or Lou Gehrig’s disease, slowed the neurological decline of volunteers in a closely watched clinical trial, according to researchers, offering a glimmer of hope for a patient population that desperately needs new treatment options.
New Clues To ALS And Alzheimer's Disease From Physics
The same process that causes dew drops to form on a blade of grass appears to play an important role in Alzheimer's disease and other brain diseases. The process, known as phase transition, is what allows water vapor to condense into liquid water, or even freeze into solid ice. That same sort of process allows brain cells to constantly reorganize their inner machinery. But in degenerative diseases that include amyotrophic lateral sclerosis, frontotemporal dementia and Alzheimer's, the phase transitions inside neurons seem to go awry...
Stephen Hawking’s long life with ALS reminds us how little we know about the disease
But Hawking is not only noteworthy for his prolific physics work: For over 50 years he lived with amyotrophic lateral sclerosis, or ALS. The disease (which in the U.K. is called motor neuron disease, and in the U.S. commonly referred to as Lou Gehrig’s disease) typically runs its fatal course more swiftly.
The Truest Cyborg I Know
A high-tech home built specifically for people living with ALS offers a new way to conceive of independence.
A New Understanding of Inflammation in the Spine
Research on the mysterious ways that ALS destroys the nervous system highlights the role of the immune system in doing both good and harm.
Hopes -- And Questions -- Are Raised By Study Of French Biotech's ALS Drug
To ALS doctors, the big story remains that, after years where nothing worked, real progress is happening. What, they wonder, if they can combine Radacava and masitinib? Would that slow decline even more?
The Ice Bucket Challenge and the promise — and the pitfalls — of viral charity
Five years later, the ALS Association tells us how they spent the money.
A Historian's Long View On Living With Lou Gehrig's
Though many parts of his body no longer work, Judt — the author of 10 books including Postwar: A History of Europe Since 1945 and Reappraisals: Reflections on the Forgotten Twentieth Century — has continued to write, with the help of an assistant who transcribes his dictation.
A New Drug for A.L.S., but the Diagnosis Remains Dire
A neighbor of mine was recently told he has a devastating neurological disorder that is usually fatal within a few years of diagnosis. Though a new drug was recently approved for the illness, treatments may only slow progression of the disease for a time or extend life for maybe two or three months.
ALS linked to occupational exposure to electromagnetic fields
“Several previous studies have found that electrical workers are at increased risk of ALS,” says Neil Pearce, at the London School of Hygiene and Tropical Medicine. “We don’t know why the risk is higher, but the two most likely explanations involve either electrical shocks, or ongoing exposure to extremely low frequency magnetic fields.”
ALS: From the #IceBucketChallenge to Cures?
As people continue to dump ice buckets and write 3 million checks, raising $100.9 million so far, we are left with the following questions: What is the status of finding a cure to this horrible disease? And, how can citizens continue their support after the #IceBucketChallenge ends?
Critics pour cold water on the Ice Bucket Challenge: are they right?
The Ice Bucket Challenge has been called “one of the most viral philanthropic social media campaigns in history”. The campaign has raised the profile of the Amyotrophic Lateral Sclerosis (ALS). But some have questioned whether campaigns like this one should really be looked at in such a positive light.
How Has Stephen Hawking Lived to 70 with ALS?
An expert on Lou Gehrig's disease explains what we know about this debilitating condition and how Hawking has beaten the odds.
My Father’s A.L.S.
A.L.S. is a long hard slog, like walking through quicksand. The scientific process of searching for a cure is also a long haul, with progress measured in baby steps. The real challenge will be to keep this disease on the national agenda long after the ice has melted.
The Complicated Connection Between Football and ALS
The film Gleason explores the heartbreaking toll of Lou Gehrig’s disease on a young athlete.
Think The ALS Ice Bucket Challenge Is Stupid? You're Wrong.
A big Internet meme like this naturally brings out the contrarians. But they’re wrong. The Ice Bucket Challenge is awesome.
What An ALS Family REALLY Thinks About the Ice Bucket Challenge
We are in for the fight of our lives with this monster, and the very LAST thing I want is for people to give quietly, anonymously, and then slink away. Raise the roof! Raise a ruckus! Call all sorts of attention to yourself! I will be happy for you and every Facebook like you receive, as you nudge ALS an inch or two closer to the collective public consciousness.
‘Gleason’ Review: A Moving Look at Sports Hero Battling ALS
Former New Orleans Saints player (and new father) Steve Gleason struggles against disease in year’s most inspirational doc.
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.
ALS TDI
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.
Gleason
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
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.
NEALS
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
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
MayoClinic
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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