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 ... Read more
January 25, 2021January 25, 2021
Patients, Caregivers in UK to Help Design Tool for Feeding Tube Decisions

People with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs), as well as their caregivers and healthcare professionals, are being recruited across ... Read more
January 22, 2021January 22, 2021
ALS Augmentative Communication Program Renamed for Advocate

Boston Children’s Hospital (BCH) is renaming its amyotrophic lateral sclerosis (ALS) Augmentative Communication Program to the Jay S. Fishman ALS-Augmentative Communication Program at Boston Children’s, the ... Read more
January 21, 2021January 21, 2021
NORD’s Caregiver Respite Program Continues Through Pandemic

Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and dedication. To help meet ... Read more
January 21, 2021January 19, 2021
As a Caregiver, Going Down the ‘What If’ Rabbit Hole Isn’t Helpful

My mind can easily spiral into anxiety if I let it. I got selected for jury duty. Along with my request to be excused ... Read more
January 21, 2021January 21, 2021
Indiana Offering Specialty License Plate to Support ALS Research

Indiana motorists can now sport a specialty license plate on their vehicles to show their support for amyotrophic lateral sclerosis (ALS), while contributing to the work into 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 ... Read more

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

Patients, Caregivers in UK to Help Design Tool for Feeding Tube Decisions

ALS Augmentative Communication Program Renamed for Advocate

NORD’s Caregiver Respite Program Continues Through Pandemic

As a Caregiver, Going Down the ‘What If’ Rabbit Hole Isn’t Helpful

Indiana Offering Specialty License Plate to Support ALS Research

The Devil Is in the Details

COVID-19 Vaccines Pose Little Risk to Rare Disease Patients, FDA, CDC Say

Outsmarting the ALS Identity Thief

Radicava Out-of-pocket Assistance Program Made Easier

Honoring Stephen Hawking, Answer ALS Opens Data Portal to Scientists

Mexiletine May Lessen Motor Neuron ‘Excitability’ to Ease Cramps, Small Trial Suggests

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

I’m Always Wondering About the Emotional Impact of ALS

Pooling Imaging Data May Make Multi-center Clinical Trials Easier

PrimeC Earns Orphan Drug Designation in Europe

First Patient Enrolled in Pridopidine Arm of the HEALEY ALS Platform Trial

COVID-19 Safety Measures Announced for Biomarker Study

CNM-Au8 May Be Source of Motor Neuron Gains Being Seen in Phase 2 Trial

Finding Beauty in the Dark of Winter

Spinogenix Wins Grant to Advance Testing of Potential Oral Therapy

My New Year’s Resolution Is to Remember There’s a Rainbow

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

Human Cell Model Captures Brain and Muscle Interaction for 1st Time

Extension Study Will Continue Evaluating Oral Edaravone

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

Talking My Way Through 2020

4th Potential ALS Therapy, SLS-005, Added to HEALEY Platform Trial

Target ALS Awards 4 Grants for Work Into Biomarker Discovery

ALS Association Cheers Likely End of 5-Month Wait for US Disability Benefits

Entering Into the Full Human Experience

AstroRx Given at Higher Dose Still Safely Slowing ALS Progression, Trial Reports

NurOwn May Be Given to Early ALS Patients in US Who Finished Phase 3 Trial

Getting Credit for Being Old (It’s About Time)

QurAlis Working on New ALS Therapy to Harness Benefits Without Side Effects

Experimental Test Could Detect ALS Before Symptom Onset

Target ALS Launches $15M Effort to Find Biomarkers, Expand Resources for ALS Research

Craving Laughter in the Midst of Sorrow

Cytokinetics Presents COURAGE-ALS Phase 3 Trial Plan for Testing Reldesemtiv

We Are All the Stuff of Legends

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