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
April 14, 2021April 12, 2021
Celebrating a Trivial Pursuit at the 100 Mark

“One hundred bottles of beer on the wall, One hundred bottles of beer! Take one down, Pass it around, Ninety-nine bottles of beer on the ... Read more
April 14, 2021April 14, 2021
Amylyx to Seek AMX0035’s Approval in Europe

Amylyx Pharmaceuticals is planning to file an application by the end of this year requesting that the European Medicines Agency (EMA) approve AMX0035 as ... Read more
April 13, 2021April 9, 2021
Friends Don’t Tell Friends How to Cure Their Disease

It all began as one of those typical online interactions when someone reaches out and asks for help. A gentleman contacted me via Facebook, explaining ... Read more
April 13, 2021April 13, 2021
Scribe Raises $100M to Advance CRISPR as Means of Treating ALS

Scribe Therapeutics has raised $100 million in funding to develop CRISPR-based gene editing tools and advance its pipeline of therapies for neurodegenerative diseases, such as ... Read more
April 12, 2021April 12, 2021
It’s Official: Each June 2 Will Be ‘Lou Gehrig Day’ for Major League Baseball

After a protracted campaign to make it happen, Major League Baseball (MLB) agreed to set aside each June 2 to pay tribute to the late ... 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

Celebrating a Trivial Pursuit at the 100 Mark

Amylyx to Seek AMX0035’s Approval in Europe

Friends Don’t Tell Friends How to Cure Their Disease

Scribe Raises $100M to Advance CRISPR as Means of Treating ALS

It’s Official: Each June 2 Will Be ‘Lou Gehrig Day’ for Major League Baseball

Invitae Opens Genetic Testing to Adults With ALS Symptoms or Family Risk

Spring Break With ALS Comes With Sacrifice and Love

Maze Therapeutics Advances Potential Gene Therapy Involving ATXN2

Bifocal Vision Correction and the Art of Dance

Ionis Opening Phase 3 Trial of ION363, Antisense Therapy for FUS-ALS

How ‘Self-care Minis’ Help Me Through a Busy Day

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

NIH Grant Supports Research Into FUS Mutations, Protein Toxicity

ALS-linked Mutations Surprising Common in Absence of Family History

New Study Seeks to Track ALS Progression With Smartphone App

Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds

‘Why Didn’t You Tell Me I Was Happy?’

Life Imitating Art Imitating Life

Biogen Declines Early Access to Tofersen Until Pivotal Trial Ends

First Patients Dosed in Phase 2 Trial of RT001

‘End ALS Challenge’ Invites AI Community to Tackle 3 Key Questions

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

Phase 3 Trial of Stem Cell Therapy NeuroNata-R Enrolling in Korea

Discovering the World Is Broken

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

I’m Craving a Measured Change of Seasons

‘Becca’ Fundraiser Set for May 4 to Honor Broadway Star Who Died of ALS

My COVID-19 Vaccine Included a Shot of Positive Attitude

#MDA2021 – Early Use of Radicava Seen to Lower Cumulative Risk of ALS Progression

#MDA2021 – Long-term Use of AMX0035 of Aid in Rapidly Advancing Disease

#MDA2021 – WVE-004 Treats Causes of ALS Due to C9orf72 Mutations in Early Study

#MDA2021 – Occurrence of Bulbar Onset ALS Higher in the Midwest

Giving Up Social Media Isn’t That Simple for Caregivers

#MDA2021 – Respiratory Difficulties Can Greatly Affect Patients’ Daily Independence

A Smart, Shakespearean Perspective on Missing the Mark

First Patient Enrolled in Phase 2a Trial of Engensis

How I Live With Gravity, Coincidence, and ALS

#MDA2021 – Rare WWOX Mutations in Patients Affect Mitochondria of Cells

HEALEY Trial Reaches 50% Enrollment for First 3 Regimens

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