Updates

November 12, 2020November 16, 2020
An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736) Sponsored Article

Feeding tubes play a critical role in ensuring that people with ALS who have difficulty swallowing can get proper nutrition, stay hydrated, and take ... Read more
February 26, 2021February 26, 2021
3D Imaging System May Have Applications in ALS Research

A novel system for three-dimensional (3D) imaging of zebrafish may be useful for studying the motor and neuronal deficits linked with amyotrophic lateral sclerosis (ALS), ... Read more
February 25, 2021February 25, 2021
Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a ... Read more
February 25, 2021February 22, 2021
It’s Important to Share Our ALS Stories on Rare Disease Day

I was overcome with grief after my husband, Todd, was diagnosed with ALS. He was just 39. Our daughter was 4 years old, and our ... Read more
February 25, 2021February 25, 2021
I AM ALS ‘Playbook’ Aims to Foster Patient Advocacy Groups

I AM ALS, a nonprofit working for people affected by amyotrophic lateral sclerosis (ALS), is offering a guide to help others who want to follow in ... Read more
February 24, 2021February 23, 2021
Like It or Not, My Steak Is Rare

“There’s an old joke, um … two elderly women are at a Catskill mountain resort, and one of ’em says, ‘Boy, the food at this ... Read more

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May 4, 2018May 4, 2018

Hypermetabolism in ALS Linked to Greater Functional Decline and Shorter Survival, Study Says

News

Patients with amyotrophic lateral sclerosis (ALS) show high prevalence of hypermetabolism, which leads to more rapid physical decline and earlier death, new study reports. The research, “Hypermetabolism in ALS is associated with greater functional decline and shorter survival,” appeared in ... Read more

An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736) Sponsored Article

3D Imaging System May Have Applications in ALS Research

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

It’s Important to Share Our ALS Stories on Rare Disease Day

I AM ALS ‘Playbook’ Aims to Foster Patient Advocacy Groups

Like It or Not, My Steak Is Rare

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

FDA, in Initial Review of NurOwn for ALS, Finds Data Lacking

Lessons I Learned From My AFOs

Doddie Foundation Gives £300,000 to Help MND Patients in UK

Higher Suicide Risk Found for US Veterans With ALS

Moderate Physical Activity May Slow Muscle Deterioration

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An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736) Sponsored Article

Facing Winter Together and Fighting as Best as We Can

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Otsuka, Eikonizo Collaborating on ALS, Rare Disease Therapies

We’re Not Getting Older, We’re Getting Luckier

ALS Association Emphasizes Importance of Feeding Tubes

Common Gene Variants Not Found in Maltese ALS Patients

Improved EyeWriter Eye-Tracking System Can Help Patients Draw, Create

BrainStorm, FDA Discuss Plans for Manufacturing of NurOwn

An ALS Diagnosis Changes Our Perception of Life

An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736) Sponsored Article

ALS Groups Given $20K Grants by Cytokinetics to Support Outreach Work

ALS Ain’t Elvis, but It Sure Can Seem Like It Is

An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736) Sponsored Article

3 Things I Would Do Differently If Diagnosed Today

Stretchable Electronics May Allow Wearable Sensors to Diagnose ALS

Adira Foundation Arises From Life-altering Accident to Help Those With Chronic Ills

Coya Raises $10M to Advance T-cell Therapy Now in Phase 2 ALS Trial

Because of ALS, I’m Doing Things I Never Envisioned

European Project Using Artificial Intelligence to Improve ALS Care

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

The Sustaining and Uplifting Fizz of Friendship

Imaging Technique Measures Mitochondrial Abnormalities in ALS

Let’s Help Bring Back the ALS Clinics

ALS Association Moving to Press for ALS Research Money from Congress

TDP-43 Protein Abnormalities in ALS Linked to DNA Damage

Melatonin Might Benefit ALS Patients, But More Research Needed

Granting Myself Permission to Sit With My Grief

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