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Amylyx Secures Funding for Therapy Candidate AMX0035
Amylyx Pharmaceuticals has raised $135 million to advance the clinical development and the potential launch ...
More from ALS News Today
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The Many Challenges of Getting Out
Normally, we live much of our life at home. My husband, Todd, has ALS and ... -
Trial of WVE-004 in Patients With C9orf72 Mutations Begins Dosing
Dosing has begun in a clinical trial of WVE-004, Wave Life Sciences‘ investigational therapy for ... -
Sperogenix Acquires Rights in China to Develop ABSK021
A subsidiary of Sperogenix Therapeutics has acquired exclusive rights to develop and commercialize ABSK021, an ... -
Partnership Aims to Lower Out-of-Pocket Costs for Rare Disease Meds
AllianceRx Walgreens Prime, a specialty and home delivery pharmacy, is partnering with TailorMed, a healthcare technology ... -
Masitinib, Given Early in ALS Course, Extends Life, Trial Data Show
Treatment with the investigational oral therapy masitinib can extend lifespan when given early in the ... -
Enrollment in Phase 3 Masitinib Trial Expected to Soon Resume in France
AB Science’s proposed measures to ensure patient safety in clinical trials of its experimental oral ... -
ALS Association, ‘Stronger as One,’ Adopts Unified Structure
In keeping with its commitment to turn amyotrophic lateral sclerosis (ALS) into a “livable disease” ... -
Nominations Open for 2022 Eurordis Black Pearl Awards
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. ... -
Time Travel With ALS: What If We Could?
I’ve been thinking about time travel after watching a couple movies with my husband, Todd, ... -
Eli Lilly, Verge Partner to Identify and Test Potential ALS Therapies
Verge Genomics and Eli Lilly have entered into a three-year collaboration to find and develop therapies for ... -
Babbling On About Current Events
“So, round and around and around we go, Where the world’s headed, nobody knows. Oh, ... -
FDA Grants Orphan Drug Designation to Pridopidine
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Prilenia’s pridopidine ... -
2 Things That Make My Life With ALS a Little Safer
Among the many challenges of living with ALS are the physical symptoms of muscle stiffness ... -
Clearing of Stress Granules, Linked to Cell Damage in ALS, Detailed
Ubiquitination — the cell’s process of tagging proteins, often to degrade unwanted ones — is ... -
FDA Grants Orphan Drug Status to Coya’s T-cell Therapy ALS001
Coya Therapeutics’ ALS001, a potential regulatory T-cell (Treg) therapy designed to halt amyotrophic lateral sclerosis ... -
Motor Neurons From Patients ‘Powerful’ Way of Spotting Therapies
Using motor neurons derived from people with amyotrophic lateral sclerosis (ALS) is a promising approach ... -
The Pressure of Caregiving Makes Self-care Difficult
Knowing that so much is riding on me creates a lot of pressure. I don’t ... -
Frequent, Intense Exercise May Promote ALS in Those With Risk Genes
Strenuous, intense exercise done frequently is an environmental risk factor for amyotrophic lateral sclerosis in people with ... -
ALS TDI Fundraiser, Azzur Fore Golf Tournament, Set for July 15
A July 15 golfing event brings the ALS Therapy Development Institute (ALS TDI) together with ... -
How I Fine-tune the Voices in My Head
I’ll admit to hearing voices — the voices in my head, that is. We’re all ... -
Alector, GSK Team Up to Develop 2 Antibody Treatments for ALS
Alector and GlaxoSmithKline (GSK) have established a partnership to develop two investigational antibodies — called ... -
Tofersen Early Access Program Now Open to SOD1-ALS Patients
The first part of Biogen’s early access program for tofersen is now open to patients ... -
Grabbing Bits of Beauty to Rejuvenate
“I am so sick of being sick,” Todd said. He’s having trouble kicking this bug ... -
Orphan Drug Status Recommended for Pridopidine in Europe
A branch of the European Medicines Agency (EMA) has recommended that Prilenia’s investigational therapy pridopidine be ... -
United We Stand, Divided I Fall
“It wasn’t me she was foolin’, ‘Cause she knew what was she was doin’, When ... -
Centogene Sets Mission to Cure 100 Rare Diseases in Next 10 Years
At its first virtual investor event, biotech company Centogene set a bold mission: to cure ... -
Exservan, Riluzole Oral Film for ALS, Now Available in US
Exservan, the first oral film formulation of riluzole for treating amyotrophic lateral sclerosis (ALS), has ... -
Will This ‘New Normal’ Ever Feel Normal Again?
The other day while watching TV, I heard the newscaster announce, “We’re in the ‘new ... -
Exservan, Riluzole as Oral Film, Soon Available in US via PANTHERx
Specialty pharmacy services for Exservan (riluzole), a twice-daily film that dissolves when placed on the ... -
Childhood Form of ALS Identified, Linked to SPLTC1 Mutations
A previously unknown form of amyotrophic lateral sclerosis (ALS) — one with onset during childhood — ... -
Nearly $12M Grant Will Fund ALS Cell Therapy Trial at Cedars-Sinai
Cedars-Sinai Medical Center, in California, has been awarded an $11.99 million grant to support a ... -
ALS + a Cold = Stress x 10
My husband, Todd, came down with a cold last week. At this stage of his ... -
ALS Association Wants More Commitment From the FDA
In a response letter to The ALS Association, the U.S. Food and Drug Administration (FDA) ... -
A Moment of Silence: Craving a ‘Re-lease’
“He wants to give the answers but his words are only Answers to nothing … ... -
HD5K Charity Run Goes Virtual, Raises £40K for MND Association
Largely due to going virtual this year, the annual HayesDavidson 5K (HD5K) charity run met ... -
How I Shift Into ALS Manual Mode
To help me get through the ups and downs of living with ALS, I’ve created ... -
New Cellular Model Used to Study FUS Gene Mutations
Mutations in the FUS gene, a common cause of amyotrophic lateral sclerosis (ALS), impair the regeneration and growth ... -
Most Caregivers Did Not Get Respite During Pandemic, UK Survey Says
Most unpaid caregivers in the U.K. have not had any breaks from their caregiving role ... -
EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes
To help patient advocacy leaders and their partners better understand how global health statistics codes ... -
Artist With ALS Finds Collaborator, Friend, to Paint Through Disease
A gay 39-year-old entrepreneur from Mexico and a retired white football player-turned-bank-CEO in the early ... -
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged ... -
Remembering Our Shared History Strengthens Our Relationship
“Can you believe our little Fafa finished ninth grade?” I asked my husband, Todd, as ... -
Partnership Targets Gene-editing Therapies for Familial ALS
CRISPR Therapeutics and Capsida Biotherapeutics have partnered to develop gene-editing therapies for familial amyotrophic lateral ... -
Bearing Down With Equine Intent
“Welcome to my nightmare, whoa, “Welcome to my breakdown, “I hope I didn’t scare you ... -
Clene Readying for HEALEY Trial Results of CNM-Au8 in Slowing ALS
Clene and its subsidiary Clene Nanomedicine are negotiating to increase their manufacturing capacity as they prepare ... -
When Second Opinions Get Social
Lately, I’ve noticed a strange trend happening in several online ALS communities I belong to. ... -
Amylyx Seeks Approval in Canada of Lead Candidate AMX0035
Amylyx Pharmaceuticals is seeking approval, in Canada, of its lead candidate AMX0035 for the treatment of amyotrophic lateral ... -
Get Ready for NORD’s Patient and Family Forum, Set for June 26-27
Those who wish to gain practical tools for living optimally with rare diseases are encouraged ... -
Tau Levels in Spinal Fluid Possible Biomarker of ALS, Likely Progression
Levels of the protein tau found in the cerebrospinal fluid (CSF) — the transparent liquid ... -
Investigational RNA Molecule May Slow ALS Progression
An investigational RNA molecule called an RNA aptamer halted the death of motor neurons and ... -
Looking Back on 11 Years of Our Joyful Sorrow
On occasion, I’ll page through the photo books my husband, Todd, made for me as ... -
Stem Cells from Fat Tissue Protect Motor Neurons in ALS Mice
Stem cells derived from fat tissue significantly improved motor function and delayed disease onset by ... -
In Pursuit of the Perfect Omelet
“No one knows what it’s like, “To be the bad man, “To be the sad ... -
Spinogenix’s SPG302 Oral Therapy Named Orphan Drug by FDA
The U.S. Food and Drug Administration (FDA) has awarded orphan drug designation to Spinogenix’s investigational ... -
$1M DOD Grant Supports AS-202 for Sporadic ALS
AccuraStem has been awarded a $1 million grant from the U.S. Department of Defense (DOD) ... -
Rare 2030 Action Campaign Pushing for European Plan for Rare Diseases
Eurordis opened a campaign, called Rare 2030 Action, that is seeking to establish a European ... -
Orphan Drug Status Sought for Ketamine as Potential ALS Therapy
PharmaTher has filed an application with the U.S. Food and Drug Administration (FDA) requesting that ... -
SLS-005 Earns Orphan Drug Status in Europe
The European Medicines Agency (EMA) has granted orphan drug designation to Seelos Therapeutics‘ investigational therapy ... -
I’m Wearing a Grief Backpack
On one of my recent daily walks, I listened to an “Office Ladies” podcast in ... -
Advocates Can Try for Grants Ahead of Rare Disease Week on Capitol Hill
Ahead of this year’s Rare Disease Week on Capitol Hill, held virtually July 14–22, the ... -
Studies Involving Masitinib Suspended
AB Science will suspend recruitment and treatment in all studies involving masitinib, a tyrosine kinase ... -
MLB, National ALS Registry Join in Honoring ‘Lou Gehrig Day’
Today, the National ALS Registry is joining the Major League Baseball to celebrate Lou Gehrig’s ... -
ALS Recognition Is Growing in Hollywood
Everyone likes being noticed — for the right things, of course. I like it when ... -
ALS Community Urges FDA to Act on Treatment Access, Research Support
People living with amyotrophic lateral sclerosis (ALS) recently shared their views on the importance of ... -
Grant Backs CRISPR Therapy Research for Familial ALS
Researchers at the University of Texas at Dallas (UT Dallas) have received an award from ... -
Shifting My Mindset to Play the Game of Life
Last week, I went to the doctor to get a problem with my ear checked ... -
What Causes ALS? National Registry Seeks Answer
At face value, the purpose of the National Amyotrophic Lateral Sclerosis (ALS) Registry seems quite ... -
Association Sets Goal of Making ALS ‘Livable’ by 2030
With a heightened emphasis on clinical trials, improved care, and identification of risk factors, the ... -
Why I’m Cautiously Optimistic About My ALS Future
If a year ago you would have told me that going without a face mask ... -
Cytokinetics Renews Partnership With The ALS Association
Cytokinetics has reaffirmed its partnership with The ALS Association in the fight against amyotrophic lateral ... -
Approved Diagnostic Molecule in Preclinical Studies to Evaluate Potential in ALS
Researchers at the University of Queensland in Australia have begun preclinical studies of macimorelin, Aeterna ... -
Project Hope Opens UBC Chair to Draw ALS Trials to British Columbia
To further support amyotrophic lateral sclerosis (ALS) patients through research and clinical studies, the Canadian ... -
When the End of Life Feels Imminent
We had a health scare a couple weeks ago, and I had to take our ... -
LifeArc Joins MND Association in 7 in 7 Challenge Bolstering Research, Care
The U.K. research organization LifeArc will match £500,000 (about $704,000) of the money raised by ... -
The Mystery Behind Keeping the Home Fires Burning
“You shoot me glances and they’re so hard to read, I misconstrue what you mean. ... -
CNM-Au8 May Be Responsible for Slower ALS Progression Seen in Phase 2 Trial
Participants in a placebo-controlled Phase 2 clinical trial of CNM-Au8, Clene Nanomedicine’s investigational oral therapy ... -
NeuroInsight Grant Going to Award 33 Fellowships to ALS, Other Researchers
A research training program in Ireland, called NeuroInsight Fellowship, will use a multi-million grant award ... -
Phase 1/2 Trial of APB-102, Gene Therapy for Familial ALS, Cleared to Open
Clearance was given to open a Phase 1/2 trial evaluating APB-102, a potential gene therapy ... -
Global Phase 3 Trial of AMX0035 to Enroll 600 ALS Patients, Amylyx Says
A global Phase 3 trial of AMX0035 as an oral treatment for amyotrophic lateral sclerosis ... -
If Only My Husband Could Try NurOwn
Two years after my husband, Todd, was diagnosed with ALS, I read an article that ... -
MediciNova Secures European Patent for MN-166 Plus Riluzole
The European Patent Office will grant MediciNova a patent that covers the combination of MN-166 ... -
SOL-257 Gene Therapy Targeting TDP-43 Shows Promise in Mice
SOL-257, an experimental gene therapy developed by SOLA Biosciences, delayed disease progression and prolonged the ... -
How I Learned to Speak Up for ALS Awareness
“I didn’t even know ALS existed until I was told I had it.” That’s what ... -
Arimoclomol Fails to Show Efficacy in Phase 3 Trial, Topline Data Show
A Phase 3 clinical trial evaluating Orphazyme’s investigational oral therapy arimoclomol for amyotrophic lateral sclerosis (ALS) ... -
Netherlands Researcher Wins 2021 Sheila Essey Award for Genetics Work
Jan Veldink, a neurologist from the Netherlands whose work in the genetics of amyotrophic lateral ... -
Phase 2 Study of RT001 in ALS Patients Fully Enrolled, Retrotope Says
A Phase 2 clinical trial evaluating oral RT001 — Retrotope’s experimental synthetic fatty acid — as a ... -
ALS Awareness Is Good, but Action Is Better
In the summer of 2014, people across the world dumped water over their heads in ... -
Boosting Cell Stress Response May Be Promising Therapy Approach
A combination of guanabenz — an approved therapy for high blood pressure — plus riluzole ... -
Come Smell the Bacon
“Everybody’s talkin’ at me, Can’t hear a word they’re sayin’, Only the echoes of my ... -
EMA Group Favors Naming SLS-005 an Orphan Drug for ALS
A committee with the European Medicines Agency favors designating Seelos Therapeutics‘ investigational therapy SLS-005 (trehalose) an orphan ... -
How I Took My First Step in Spreading ALS Awareness
Like many newly diagnosed ALS patients, I was overwhelmed by the steep learning curve of ... -
Variety of Advocacy, Fundraising Events Mark ALS Awareness Month
National Amyotrophic Lateral Sclerosis Awareness Month, recognized in the U.S. each May since 1992, continues ... -
MDA Golf Events to Support Neuromuscular Research, Patient Care
Registration is now open for fundraising events at four championship golf courses, whose fees will ... -
Biogen Agrees to Tofersen Access in July for Rapidly Advancing ALS
People with very rapidly progressing familial amyotrophic lateral sclerosis (ALS) caused by mutations in the SOD1 gene may ... -
Facing Uncertainty in Life With ALS
Life is unpredictable. People get in car accidents. They have heart attacks. Tornadoes strike. I ... -
$60K Grant to Support Work on Biomarkers for ALS, Like Disorders
Applications for a $60,000 one-year grant are now open for researchers working to discover or ... -
#AANAM – Progression May Be Evident in About 1.5 Years of Radicava Start
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
How We’ll Find That Perfect Ending to the ALS Story
Last week, I caught up with a friend I hadn’t seen in a while. After ... -
#AANAM – Genetic Testing Recommended for All ALS Patients
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
Medicare Adds Speech, Oral Therapy to Telehealth Services
Speech and oral therapy were added to covered services available by telemedicine for people with ... -
#AANAM – Trial Will Evaluate Tofersen in Presymptomatic SOD1 Patients
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
Quick Approval Given COVID Vaccines Raise Concerns, Rare Disease Patients Say
More than half of the people with rare diseases and their caregivers, asked in a ... -
Distracting Myself From the Pain Helps Me Cope With It
My husband, Todd, and I had our second doses of the COVID-19 vaccine last week. ... -
#AANAM – Better REFALS Trial Response Seen in ALS Patient Group
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
#AANAM – Findings Due in Japan Study of Repurposed ALS Therapy
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
The Redemptive Power of a Stroll on the Beach
“Tracing your footprints in the sand, Trying to walk like a man, … But I ... -
#AANAM – Unique Immune Profile Identified for Fast-progressing ALS
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
#AANAM – C9orf72 Mutations Linked to Early, Worse Cognitive Deficits
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN ... -
#AANAM – AP-101 Raises No Safety, Tolerability Concerns in Phase 1 Trial
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 Virtual AAN Annual ... -
Toyota, MND Association Team Up to Raise Funds, Awareness in UK
The Motor Neurone Disease (MND) Association and Toyota (GB), the U.K. division of Toyota, have established ... -
EveryLife Scholarship Fund Open Until May 7 for Adults With Rare Diseases in US
The EveryLife Foundation for Rare Diseases is accepting applications for a scholarship program that aims to ... -
Actimed Plans to Advance Treatment for Muscle Wasting in ALS
Actimed Therapeutics is developing S-oxprenolol to prevent muscle wasting and body mass loss due to amyotrophic lateral ... -
Wanting More Than Family Screen Time
Family movie nights are great, but it’s a challenge to think of other things we ... -
US Students Affected by ALS Can Apply for Scholarships Until May 24
The ALS Association is now accepting applications for the Jane Calmes ALS Scholarship Fund, aimed ... -
Celebrating a Trivial Pursuit at the 100 Mark
“One hundred bottles of beer on the wall, One hundred bottles of beer! Take one ... -
Amylyx to Seek AMX0035’s Approval in Europe
Amylyx Pharmaceuticals is planning to file an application by the end of this year requesting ... -
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 ... -
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 ... -
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 ... -
Invitae Opens Genetic Testing to Adults With ALS Symptoms or Family Risk
People at risk or suspected of having some of the most common neurodegenerative disorders, including ... -
Spring Break With ALS Comes With Sacrifice and Love
I think a lot about how a parent’s ALS affects kids. Recently, an online friend ... -
Maze Therapeutics Advances Potential Gene Therapy Involving ATXN2
Maze Therapeutics is advancing the development of a lead gene therapy candidate for amyotrophic lateral sclerosis (ALS), ... -
Bifocal Vision Correction and the Art of Dance
“I can see clearly now the rain is gone. I can see all obstacles in ... -
Ionis Opening Phase 3 Trial of ION363, Antisense Therapy for FUS-ALS
Ionis Pharmaceuticals is opening a Phase 3 safety and efficacy trial of ION363 (jacifusen) in amyotrophic lateral ... -
How ‘Self-care Minis’ Help Me Through a Busy Day
I’m always on the lookout for self-care strategies that help me cope and live with ... -
NIH Grant Supports Research Into FUS Mutations, Protein Toxicity
The National Institutes of Health (NIH) has awarded a $450,000 grant to a university research ... -
ALS-linked Mutations Surprising Common in Absence of Family History
A higher than expected proportion of amyotrophic lateral sclerosis (ALS) patients — most without a ... -
New Study Seeks to Track ALS Progression With Smartphone App
The Muscular Dystrophy Association (MDA) is urging people with amyotrophic lateral sclerosis (ALS) to take ... -
Cost of Rare Diseases in US? Nearly $1 Trillion in 2019, EveryLife Foundation Finds
As anyone affected by a rare disease knows, treating the illness while trying to go ... -
‘Why Didn’t You Tell Me I Was Happy?’
After my husband, Todd, was diagnosed with ALS, we thought he would have at most ... -
ALS Groups Give $1.1M More in Support of T-cell Therapy in Phase 2 Trial
The ALS Association, Muscular Dystrophy Association (MDA), and ALS Finding a Cure have given an additional ... -
Life Imitating Art Imitating Life
“They’re gonna put me in the movies, They’re gonna make a big star out of ... -
Biogen Declines Early Access to Tofersen Until Pivotal Trial Ends
Biogen will not offer early access to tofersen, its experimental therapy for familial amyotrophic lateral ... -
First Patients Dosed in Phase 2 Trial of RT001
Retrotope has dosed the first patients in its recently-initiated Phase 2 clinical trial evaluating RT001 ... -
‘End ALS Challenge’ Invites AI Community to Tackle 3 Key Questions
Roche Canada’s Artificial Intelligence Centre of Excellence (AI CoE), in collaboration with Answer ALS and ... -
Phase 3 Trial of Stem Cell Therapy NeuroNata-R Likely to Expand to US
A Phase 3 clinical trial is recruiting adults with amyotrophic lateral sclerosis (ALS) to evaluate the ... -
Discovering the World Is Broken
“What the heck happened to that guy?” a young boy called loudly to a woman ... -
Cox Offers New Eye-controlled TV Remote for ALS, Other Patients
A new feature of Cox’s accessible web remote enables people with amyotrophic lateral sclerosis (ALS) ... -
I’m Craving a Measured Change of Seasons
“When she walks, she’s like a samba, That swings so cool and sways so gently, ... -
‘Becca’ Fundraiser Set for May 4 to Honor Broadway Star Who Died of ALS
To honor the memory of Broadway actor and singer Rebecca Luker, who died of complications ... -
My COVID-19 Vaccine Included a Shot of Positive Attitude
Although I was smack in the middle of a vast parking lot and surrounded by ... -
#MDA2021 – Early Use of Radicava Seen to Lower Cumulative Risk of ALS Progression
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical ... -
#MDA2021 – Long-term Use of AMX0035 of Aid in Rapidly Advancing Disease
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical ... -
#MDA2021 – WVE-004 Treats Causes of ALS Due to C9orf72 Mutations in Early Study
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical ... -
#MDA2021 – Occurrence of Bulbar Onset ALS Higher in the Midwest
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical ... -
Giving Up Social Media Isn’t That Simple for Caregivers
I gave up social media for Lent. Many Christians deny themselves some pleasure or refrain ... -
#MDA2021 – Respiratory Difficulties Can Greatly Affect Patients’ Daily Independence
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical ... -
A Smart, Shakespearean Perspective on Missing the Mark
“Missed it by that much …” That was one of the catchphrases from the farcical ... -
First Patient Enrolled in Phase 2a Trial of Engensis
The first patient has been enrolled in a Phase 2a clinical trial investigating Helixmith’s gene ... -
How I Live With Gravity, Coincidence, and ALS
I’ll admit that during my high school days, when our studies turned toward physics, I ... -
#MDA2021 – Rare WWOX Mutations in Patients Affect Mitochondria of Cells
Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA ... -
HEALEY Trial Reaches 50% Enrollment for First 3 Regimens
The HEALEY ALS platform trial, which is evaluating the safety and efficacy of several potential ... -
Mitsubishi Tanabe Establishes New US Research Facility
Mitsubishi Tanabe Pharma Corporation (MTPC) is opening a new research site in the Boston area dedicated ... -
Life With ALS Is Hard, and Sometimes the Little Things Are Too Much
Sometimes little things push me over the edge. One morning last week, I was already ... -
Amylyx Planning to Ask Health Canada to Approve AMX0035 to Treat ALS
Amylyx Pharmaceuticals plans to soon apply to Health Canada, requesting approval of oral AMX0035 to treat ... -
Peaceful Reflections From an Empty Bucket
“‘Cause I got a peaceful, easy feelin’, And I know you won’t let me down, ... -
Partnership Gets Communication Devices to Mississippi ALS Patients
Under a new local partnership, Mississippi residents who have amyotrophic lateral sclerosis (ALS) will have ... -
With Clinical Trial Criteria, We’re Stuck on the Outside, Looking In
“Have you ever participated in clinical trials?” That’s a common question among ALS patients. What’s ... -
Shrinkage in Cell Structures Occurs in Early Disease Stages
Changes to a critical structure within the cell nucleus of spinal nerve cells — the ... -
Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day
Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is ... -
PharmaTher Plans to Develop Ketamine as Potential ALS Treatment
Under an agreement with the University of Kansas, PharmaTher has gained exclusive worldwide rights to ... -
ALS Mouse Study Finds Favor in Muse Stem Cells
Injecting a specific type of stem cells into the bloodstream was able to reduce muscle ... -
I’m Thankful for Getting a Chance to Miss You
“I’m glad I got the chance to miss you,” I told my husband, Todd, when ... -
NurOwn Showed No Benefit Over Placebo in Trial, FDA Says
The small difference in treatment responses among amyotrophic lateral sclerosis (ALS) patients receiving NurOwn versus ... -
PrimeC Safe, Well-tolerated; Earns US Patent Allowance
PrimeC is safe and well-tolerated for the treatment of amyotrophic lateral sclerosis (ALS) and showed signs ... -
Echo! Can You Understand Me, Now?
Last week, I stepped onto my soapbox (mine has special safety handrails) and voiced my ... -
Compound Reverses Motor Neuron Damage in ALS Mice
For the first time, a compound was able to restore the health of diseased upper ... -
ALS Association Survey Focuses on Caregiver Needs and Well-being
ALS Focus has opened a new survey looking specifically at the needs and challenges of ... -
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 ... -
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 ... -
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 ... -
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 ... -
Like It or Not, My Steak Is Rare
“There’s an old joke, um … two elderly women are at a Catskill mountain resort, ... -
Rare Disease Day at NIH, Set for March 1, Growing Year by Year
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place ... -
FDA, in Initial Review of NurOwn for ALS, Finds Data Lacking
Existing safety and effectiveness data from a Phase 3 clinical trial of NurOwn — an investigational cell-based ... -
Lessons I Learned From My AFOs
I’m happy to announce I’ve finally resolved a love-hate relationship — with my AFOs. It ... -
Doddie Foundation Gives £300,000 to Help MND Patients in UK
The My Name’5 Doddie Foundation has donated a total of £300,000 (about $420,600) to two ... -
Higher Suicide Risk Found for US Veterans With ALS
Military veterans with amyotrophic lateral sclerosis (ALS) are nearly four times as likely to commit ... -
Moderate Physical Activity May Slow Muscle Deterioration
Moderate physical activity may slow muscle deterioration associated with the progression of amyotrophic lateral sclerosis ... -
Facing Winter Together and Fighting as Best as We Can
It’s been an intense couple weeks of winter weather on Michigan’s Keweenaw Peninsula. After a ... -
Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients
People with rare disorders have a worse healthcare experience than those affected by chronic diseases, ... -
Otsuka, Eikonizo Collaborating on ALS, Rare Disease Therapies
The McQuade Center for Strategic Research and Development (MSRD) and Eikonizo Therapeutics have entered a collaboration ... -
We’re Not Getting Older, We’re Getting Luckier
“Ride a painted pony, Let the spinnin’ wheel spin.” Recently, I had a flashback to ... -
ALS Association Emphasizes Importance of Feeding Tubes
To commemorate Feeding Tube Awareness Week, the ALS Association recently highlighted the benefits of feeding tubes ... -
Positive Rituals and My Evolving Morning Routine
Ten years ago, if you had asked me how I was feeling when I woke ... -
Common Gene Variants Not Found in Maltese ALS Patients
Maltese people with amyotrophic lateral sclerosis (ALS) do not exhibit mutations in the genes commonly associated with ... -
Improved EyeWriter Eye-Tracking System Can Help Patients Draw, Create
With a new version of a low-cost eye-tracking system called EyeWriter, artists and others who ... -
BrainStorm, FDA Discuss Plans for Manufacturing of NurOwn
BrainStorm Cell Therapeutics met with U.S. Food and Drug Administration (FDA) officials regarding its plans ... -
An ALS Diagnosis Changes Our Perception of Life
Some people take a long time to get an ALS diagnosis, which is a drawn-out, ... -
ALS Groups Given $20K Grants by Cytokinetics to Support Outreach Work
Cytokinetics awarded two amyotrophic lateral sclerosis (ALS) patient advocacy organizations grants worth $20,000, in recognition ... -
ALS Ain’t Elvis, but It Sure Can Seem Like It Is
The 1987 song “Elvis Is Everywhere” by Mojo Nixon and Skid Roper asserts the omnipresence ... -
Pandemic Won’t Stop Rare Disease Day on Feb. 28
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 ... -
3 Things I Would Do Differently If Diagnosed Today
I’m often asked by others in the ALS community for tips and insight from my ... -
Stretchable Electronics May Allow Wearable Sensors to Diagnose ALS
Stretchable electronics that are “intrinsically” stretchable — meaning they have tissue-like mechanical properties that integrate ... -
Adira Foundation Arises From Life-altering Accident to Help Those With Chronic Ills
Greg Smiley’s world changed abruptly in 2013. He was racing down a mountain road on ... -
Coya Raises $10M to Advance T-cell Therapy Now in Phase 2 ALS Trial
Coya Therapeutics has raised $10 million in funding to advance the development of ALS001, a ... -
Because of ALS, I’m Doing Things I Never Envisioned
When I met my husband, Todd, I was a renter, so I didn’t need to ... -
European Project Using Artificial Intelligence to Improve ALS Care
A new project run by a consortium of European institutions aims to improve the care ... -
NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns
While progress was made last year on newborn screening and other policy issues critical to ... -
The Sustaining and Uplifting Fizz of Friendship
If the sky above you, Grows dark and full of clouds, And that old north ... -
Imaging Technique Measures Mitochondrial Abnormalities in ALS
An imaging technique, called 31-phosphorus magnetic resonance spectroscopy (MRS), can be used to assess mitochondrial ... -
Let’s Help Bring Back the ALS Clinics
As I hung up the phone following a short chat with my neurologist, an old ... -
ALS Association Moving to Press for ALS Research Money from Congress
As a new U.S. Congress prepares to start the annual process of determining funding for federal ... -
TDP-43 Protein Abnormalities in ALS Linked to DNA Damage
Abnormalities in the activity of the protein TDP-43, whose gene is often mutated in amyotrophic ... -
Melatonin Might Benefit ALS Patients, But More Research Needed
People with amyotrophic lateral sclerosis (ALS) who use melatonin have better survival outcomes and experience ... -
Granting Myself Permission to Sit With My Grief
It’s hard to find guides for the grief that accompanies a long, progressive terminal illness. ... -
$2.2M Grant Aims to Move M102, Potential ALS Therapy, Into Trials
Work into moving M102, an investigative treatment for amyotrophic lateral sclerosis (ALS), into testing in ... -
Toward a Better Understanding of the Legend of Growing Pains
“Oh yes, I am wise, but it’s wisdom born of pain. — “I Am Woman,” ... -
Japan OKs MediciNova Patent for Ibudilast Plus Riluzole in Treating ALS
A patent application allowing MediciNova to use its investigational therapy ibudilast (MN-166) in combination with riluzole to treat people ... -
Why a Football Player and a Politician Are in My ‘ALS Inspiration’ Folder
I’ve always believed in the importance of having heroes and role models to help me cope with ALS. ... -
MTPA to Commercialize ALS Therapy Exservan in the US
Mitsubishi Tanabe Pharma America (MTPA) has entered an agreement with Aquestive Therapeutics to market Exservan, ... -
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 ... -
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 ... -
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 ... -
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 ... -
The Devil Is in the Details
“Pleased to meet you, hope you guess my name.” — Keith Richards and Mick Jagger, “Sympathy ... -
Outsmarting the ALS Identity Thief
Lately, I’ve seen an escalation of messages urging me to protect myself from hackers, scammers, ... -
Radicava Out-of-pocket Assistance Program Made Easier
Mitsubishi Tanabe Pharma America announced changes to enhance its out-of-pocket assistance program for people with ... -
Honoring Stephen Hawking, Answer ALS Opens Data Portal to Scientists
To mark what would have been the 79th birthday of the theoretical physicist Stephen Hawking, ... -
Mexiletine May Lessen Motor Neuron ‘Excitability’ to Ease Cramps, Small Trial Suggests
Mexiletine, a heart medication used off-label to treat muscle cramps due to amyotrophic lateral sclerosis ... -
I’m Always Wondering About the Emotional Impact of ALS
“Be nicer,” my daughter whispered to me when I was on the phone telling a ... -
Pooling Imaging Data May Make Multi-center Clinical Trials Easier
Imaging data of brain inflammation in people with amyotrophic lateral sclerosis (ALS) that is obtained ... -
PrimeC Earns Orphan Drug Designation in Europe
The European Medicines Agency has granted orphan drug designation to PrimeC, an investigational combination therapy ... -
First Patient Enrolled in Pridopidine Arm of the HEALEY ALS Platform Trial
A pivotal clinical trial evaluating pridopidine for the treatment of amyotrophic lateral sclerosis (ALS) has ... -
COVID-19 Safety Measures Announced for Biomarker Study
Mitsubishi Tanabe Pharma America (MTPA) is taking proactive measures to address patient safety in its ... -
CNM-Au8 May Be Source of Motor Neuron Gains Being Seen in Phase 2 Trial
Nearly half of all patients in a Phase 2 trial of CNM-Au8, Clene Nanomedicine’s lead ... -
Finding Beauty in the Dark of Winter
“I forgot how dark it is all the time,” my brother commented when he visited ... -
Spinogenix Wins Grant to Advance Testing of Potential Oral Therapy
Spinogenix has been awarded a research grant from the U.S. Department of Defense (DOD) to ... -
My New Year’s Resolution Is to Remember There’s a Rainbow
“There’s nothing but twigs and seeds, twigs and seeds, And they sure don’t deliver the ... -
Human Cell Model Captures Brain and Muscle Interaction for 1st Time
A system using human cells to model how the brain controls muscle movement has been ... -
Extension Study Will Continue Evaluating Oral Edaravone
Mitsubishi Tanabe Pharma America (MTPA) has launched an extension study to assess the long-term effects ... -
Top 10 ALS Stories of 2020
ALS News Today brought you daily coverage of key findings, treatment developments, clinical trials, and ... -
Talking My Way Through 2020
One of my personal traditions at the end of the year is a quick flip ... -
4th Potential ALS Therapy, SLS-005, Added to HEALEY Platform Trial
A Phase 2b/3 trial investigating the potential of SLS-005 (trehalose) to slow the progression of amyotrophic ... -
Target ALS Awards 4 Grants for Work Into Biomarker Discovery
Target ALS, a nonprofit working to advance research, has awarded a second round of grants ... -
ALS Association Cheers Likely End of 5-Month Wait for US Disability Benefits
After years of behind-the-scenes work, the ALS Association is celebrating passage of the ALS Disability ... -
Entering Into the Full Human Experience
This Christmas season, we reflect on Jesus’ entering into this beautiful, yet broken world. God ... -
AstroRx Given at Higher Dose Still Safely Slowing ALS Progression, Trial Reports
A single infusion of AstroRx, an off-the-shelf, investigational cell therapy for amyotrophic lateral sclerosis (ALS), ... -
NurOwn May Be Given to Early ALS Patients in US Who Finished Phase 3 Trial
BrainStorm Cell Therapeutics has opened an expanded access program (EAP) in the U.S. to allow ... -
Getting Credit for Being Old (It’s About Time)
Every week, I receive an email from a friend that’s filled with cartoons, jokes, and ... -
QurAlis Working on New ALS Therapy to Harness Benefits Without Side Effects
Researchers at QurAlis have discovered a molecule with the potential to act as a treatment ... -
Experimental Test Could Detect ALS Before Symptom Onset
A method that measures tiny amounts of aggregated TDP-43 protein in the cerebrospinal fluid may ... -
Target ALS Launches $15M Effort to Find Biomarkers, Expand Resources for ALS Research
Target ALS is launching an expansive $15 million research initiative aimed at discovering biomarkers and developing ... -
Craving Laughter in the Midst of Sorrow
It’s time again to send our annual Christmas letter and picture card to our friends ... -
Cytokinetics Presents COURAGE-ALS Phase 3 Trial Plan for Testing Reldesemtiv
Cytokinetics is preparing a global Phase 3 trial that will enroll more than 500 people ... -
We Are All the Stuff of Legends
“All the world’s a stage, And all the men and women merely players; They have ... -
Ezogabine Decreases Motor Neuron Excitability in ALS Clinical Trial
The anticonvulsant ezogabine can significantly reduce abnormal motor neuron excitability in people with amyotrophic lateral ... -
Rebuilding My Confidence and Avoiding Life’s Banana Peels
One of the first symptoms of ALS I experienced was a sudden weakness in my legs ... -
Actimed Licenses European Rights to ACM-002 for Treating ALS
Actimed Therapeutics has obtained the rights to develop and commercialize ACM-002 (S-oxprenolol) for the treatment ... -
Bill Easing Access to Disability Benefits for ALS Patients Passes US Senate
The U.S. Senate has passed a bill that may make it easier for people with ... -
A Physical Presence in Our Lives
On Saturday morning, I lay cuddled next to my husband, Todd, in bed. I could ... -
Canada Approves Xeomin for Excessive Drooling, Common in ALS Patients
Canadian authorities have approved Xeomin (incobotulinumtoxinA) for the treatment of chronic sialorrhea, or excessive drooling, ... -
Stumbling Upon the Sublime in a Minefield of the Ridiculous
“Well I don’t know how to tell the weight of the sun, … How the ... -
Two ALS Staging Systems May Be Useful Assessment Tools in Clinical Trials
Two amyotrophic lateral sclerosis (ALS) staging systems — the King’s and the Milano-Torino’s, known as MiToS ... -
Zooming Past My Previous Predictions
During these final weeks of 2020, I’ve been reflecting on the various ways this world ... -
Polio-related Research Into Brain Motor Network Shows Potential ALS Marker
New research into the motor networks of polio survivors shows the brain may “rewire” itself ... -
First Set of Guidelines for ALS Care, Management in Canada Published
A first set of Canadian guidelines for the care of people with amyotrophic lateral sclerosis ... -
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BREN-02, Potential Restorative ALS Therapy, Named Orphan Drug by FDA
BREN-02, a lab-made form of the human protein engrailed 1 (EN1), has been designated an ... -
Dosing Begins in Phase 2 Study of Pegcetacoplan in ALS Patients
A first patient has been dosed in the Phase 2 trial investigating pegcetacoplan (APL-2), Apellis ... -
50K-signature Petition Calling for Swift Approval of AMX0035 Given FDA, Amylyx
The ALS Association and I AM ALS have filed a petition with the U.S. Food and Drug Administration (FDA), calling on ... -
FDA Grants Orphan Drug Designation to SLS-005 for Slowing ALS Progression
The U.S. Food and Drug Administration (FDA) has awarded orphan drug designation to Seelos Therapeutics‘ SLS-005 ... -
Growing Up With a Parent’s Illness
I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha ... -
Adapting With the Hope That a Tradition Can Be Toppled
“Put me in, coach, I’m ready to play today, Look at me, I can be ... -
NurOwn Fails to Slow Disease Progression in ALS Patients, Top-line Data Show
BrainStorm Cell Therapeutics’ cell-based therapy NurOwn failed to significantly slow disease progression in people with ... -
Banishing Thought Loops and Living One Day at a Time
As one of the moderators for the ALS News Today Forums, I get to welcome ... -
Radicava’s Effectiveness for ALS Not Established, Real-life Use Suggests
A review of Radicava (edaravone), an approved amyotrophic lateral sclerosis (ALS) treatment, found the medication generally ... -
UK Charities Offer Counseling to Children Confronting ALS, MND in Family
The Motor Neurone Disease (MND) Association and the children’s charity Barnardo’s have launched a counseling ... -
Wearable Facial Sensor May Help ALS Patients More Easily Communicate
A lightweight, wearable sensor is being developed that can detect minute facial movements and translate ... -
An Ounce of Prevention is Worth a Pound of Cure (Benjamin Franklin, 1736)
Feeding tubes play a critical role in ensuring that people with ALS who have difficulty ... -
How ALS Affects the Hierarchy of Needs
I’ve written before about how the world has been shrinking for my husband, Todd, and ... -
Combo Bone Marrow Cell Transplant Seen to Benefit Mice in ALS Model
Transplanting a combination of two types of modified bone marrow cells eased motor deficits and prolonged ... -
Enjoying the Vagaries of Life’s Carnival Ride
“Run away, run away/ It’s the restless age/ Look away, look away/ You can turn ... -
Global Phase 3 Study of Oral Edaravone to Treat ALS Fully Enrolled
The Phase 3 clinical trial investigating an oral suspension formulation of edaravone (MT-1186) in treating amyotrophic ... -
Finding the Funny Moments in Caregiving
ALS is certainly a serious condition, and there is nothing funny about it, but many ... -
AC Immune Partners With WuXi to Speed Development of TDP-43 Antibody
AC Immune and WuXi Biologics have announced a partnership to advance the development of an ... -
Grand Slam for Lou Gehrig Day Campaign With All 30 MLB Teams On Board
The campaign for a league-wide annual Lou Gehrig Day recently received a major boost as ... -
Over-the-Counter Pain Relievers Work to Prevent ALS, Study Suggests
Use of over-the-counter pain relievers, including acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen, significantly ... -
‘Once Upon a Time’ Becomes ‘Once When He Still Could’
My office offers retreat, in that it only has wall décor we acquired before ALS ... -
Stentrode Device Allows Computer Control by ALS Patients With Partial Upper Limb Paralysis
The Stentrode, a minimally invasive, fully implanted wireless device that transmits signals from the brain’s ... -
We Are Family: The Case For Reciprocating Care
“Your lifelong membership is free, Keep a-giving each brother all you can. Oh, aren’t you ... -
1st Patient Enrolled in Phase 2a Trial Testing AT-1501 in ALS
Novus Therapeutics has enrolled the first patient in its Phase 2a trial of AT-1501 in ... -
During National Family Caregivers Month, We Say Thank You!
Although it’s hard to find much to celebrate in 2020, this year happens to mark ... -
Stronger ACT for ALS Act Would Foster New Treatments, ALS Association Says
After working for months behind the scenes, the ALS Association is calling a strengthened Accelerating ... -
Specific Immune Cell, With Human Equivalent, Seen to Reverse Nerve Damage in Mice
A newly identified type of immune cell — a kind of immature neurophil or white blood ... -
UK Organization ’Same But Different’ Announces ‘Glimmer of Hope’ Photo Contest Winner
A photo of a bespectacled young boy, his red baseball cap slightly askew as he ... -
Eli Lilly Acquires Disarm and Its SARM1 Inhibitors for Preventing Axonal Degeneration
Eli Lilly and Company has acquired Disarm Therapeutics and its emerging therapies designed to prevent axonal degeneration ... -
When Positivity Becomes a Problem
Last week, we had an early snowfall, even for Michigan’s Keweenaw Peninsula. Snow frosted the ... -
Bristol Myers Squibb Partners With Insitro to Develop New ALS Therapies
Bristol Myers Squibb has entered a five-year research collaboration with the machine learning startup insitro ... -
A Problem Warranting Animated Attention
“The world is covered by our trails / Scars we cover up with paint / ... -
Possible Way Seen of Preventing Inflammation That Precedes ALS Onset
Toxic clumps due to the buildup of the TDP-43 protein can trigger the neuronal inflammation that precedes ... -
Adding My Voice to a Valuable Study
I love being in win-win situations. We all do. Especially while world events continue to ... -
Dosing Begins in Trial of ION541, Antisense Treatment for Sporadic ALS
A Phase 1/2 clinical trial investigating ION541, Ionis Pharmaceuticals‘ third antisense treatment and its first ... -
Diabetes Appears to Lower Risk of ALS, Review Study Reports
People with diabetes mellitus, particularly those with type 2 diabetes, appear to be at a significantly ... -
Catalent to Produce BrainStorm’s NurOwn Cell Therapy for ALS
Catalent Biologics has agreed to manufacture NurOwn, the cell-based therapy by BrainStorm Cell Therapeutics being evaluated in ... -
We Are Both Patients
I asked my husband, Todd, why he thought our relationship worked as well as it ... -
Pivotal Trial Testing Multiple Therapies in ALS Now Enrolling at Third Scotland Site
MND-SMART, a pivotal platform trial designed to simultaneously test multiple treatment candidates in people with ... -
Life Amid a Torrent of Fire and Rain
“Won’t you look down upon me, Jesus?/ You gotta help me make a stand./ You ... -
$2M NIH Grant Supports Work Into Cell Structures Linked to ALS Protein Clumps
A $2 million grant from the National Institutes of Health (NIH) is funding work to ... -
How to Find Balance in an Unbalanced Life
It’s always gratifying to know what I write is helpful to others living with ALS. ... -
Study Identifies Environmental Risk Factors for Developing ALS
Head trauma, electrical burns, and hobbies involving the toxic metal lead appear to be risk ... -
AMX0035 Significantly Extends ALS Patients’ Lives, Long-term Data Show
Treatment with AMX0035, Amylyx’s experimental oral therapy, significantly extends the lives of amyotrophic lateral sclerosis ... -
Activities and Events Underway for AAC Awareness Month
October is International Augmentative and Alternative Communication (AAC) Awareness Month, set aside annually to inform ... -
Our Bittersweet Family Life
We had an unseasonably warm fall day while Todd’s sister was visiting from out of ... -
€1 Million Contest Seeks to Improve Functionality in ALS
With a €1 million (about $1.1 million) prize being offered, researchers are invited to join ... -
What’s Next After Your Ship Comes In?
“What do we do now?” That line from the 1972 movie “The Candidate” came to ... -
Nerve Injury Progressing in Top-down Manner Evident in Bulbar ALS
Most people with bulbar onset amyotrophic lateral sclerosis (ALS) showed distinct signs of motor neuron ... -
Phase 2 Study of Pegcetacoplan in Recently Diagnosed Patients Opens
A Phase 2 and potentially pivotal study investigating pegcetacoplan (APL-2) as a potential treatment for amyotrophic lateral ... -
BrainStorm Details Phase 3 Trial Design of NurOwn for Rapidly Progressing ALS
BrainStorm Cell Therapeutics is sharing the details of the design of its Phase 3 clinical ... -
Libra Therapeutics Launches With Pipeline of 3 ALS Treatment Candidates
Libra Therapeutics has officially announced its launch with a platform dedicated to developing new treatments ... -
Creativity Is a Life-giving Activity
We had snow in the air last week, reminding me that Christmas is coming, and ... -
Scribe, Biogen Partner to Develop Gene Therapy for ALS, Other Neurological Diseases
Scribe Therapeutics and Biogen, a biotechnology company focused on neurological diseases, have established a research ... -
Applause Springs Forth From a Crash Landing
No one applauds when the train is on time. That was the metaphor I invoked ... -
MDA Issues $1.6M in Grants to Boost ALS Research
The Muscular Dystrophy Association (MDA) has awarded five new grants totaling more than $1.6 million ... -
Evaluating What’s Working in My Life, and What’s Not
Happy October, everyone! It’s time for a mini-celebration. During this crazy year, each new month ... -
Target ALS, Spartan Team Up on ‘The Toughest Challenge’ for ALS Research
Target ALS is teaming up with Spartan on a global initiative to raise funds for ... -
Saphyr Technology First to Measure DNA Expansions in Key ALS Gene
Saphyr, an ultra-long DNA analysis technology by Bionano Genomics, is the first to successfully measure ... -
Finding Strength to Keep Going
On most days, I walk three laps around the fields on my mom’s property next ... -
Creatine Kinase Protein Levels Linked to Better Survival in ALS Patients
Creatine kinase, a marker of muscle damage, is significantly elevated in people with amyotrophic lateral ... -
A Surprise Course in Life Support 101
“Love the One You’re With.” In his 1970 release, Stephen Stills advised folks to show ... -
Large Genetic Analysis Newly Links 5 Genes to Sporadic ALS
A combined analysis using people of Japanese, Chinese, and European ancestry identified five new genes ... -
Why Ruth Bader Ginsburg Is My ALS Role Model
My heroes and role models come in all shapes and sizes. For example, Ruth Bader ... -
Impaired RNA Quality Control May Underlie Neurodegeneration in People with C9orf72 Mutations
An impairment in the activity of the RNA exosome complex, which cells use to degrade defective ... -
University of Sheffield Partners With Aclipse to Advance ALS Treatment M102 to Clinical Trial
M102, a potential treatment for amyotrophic lateral sclerosis (ALS), is advancing into its first clinical ... -
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Japan Grants Patent to Brainstorm Covering Technique for NurOwn
The Japan Patent Office has granted a patent to Brainstorm Cell Therapeutics covering the proprietary ... -
FightMND Grant Awards Further Work Into ALS, Other Motor Neuron Diseases
Three grants given researchers at two centers in Australia will advance work into ways of ... -
When We Do Something, Something Happens
Hang on tightly, it’s another week of weather events, news alerts, and a continuing health ... -
$1.9M NIH Grant Supports Study of Ways to Preserve Swallowing, Breathing
The National Institutes of Health (NIH) has awarded a $1.9 million grant to University of ... -
Novus Acquires Anelixis, Plans to Move AT-1501 Into Phase 2 Trial for ALS
Novus Therapeutics has acquired Anelixis Therapeutics and its portfolio, including the antibody AT-1501, a potential treatment for amyotrophic ... -
Former NFL Player, Microsoft Team to Make Technology More Accessible
Microsoft opened its 2014 Super Bowl ad with the question: “What is technology?” As Steve Gleason, an ... -
The Burden of Knowing the Future
Lulu Wang’s film “The Farewell” is based on an actual lie. The 2019 comedic drama ... -
Investigational Treatment IPL344 Safely Slows ALS Progression in Small Phase 1/2a Trial
IPL344, Immunity Pharma‘s investigational therapy for amyotrophic lateral sclerosis (ALS), has a positive safety and tolerability ... -
Dosing Begins in Phase 2a Study of ALZT-OP1a for Mild-to-Moderate ALS
The first patient has been dosed in a Phase 2a clinical trial evaluating the safety ... -
Things to Do While Waiting for a Cure
Big news buzzed through the ALS community last week about AMX0035, an investigational treatment for ... -
Helixmith Planning Phase 2 Trial of Engensis, Potential Gene Therapy for ALS
Helixmith has selected Worldwide Clinical Trials to run a planned Phase 2 study of Engensis (VM202), ... -
PrimeC Shows Potential to Slow ALS Progression, Interim Data Reveal
PrimeC is safe and well-tolerated for the treatment of amyotrophic lateral sclerosis (ALS) and shows ... -
Study Describes New Compounds With Potential to Treat ALS
Newly developed compounds derived from ebselen could be used to treat some types of amyotrophic ... -
Gaining Perspective Through Journaling
Perspective can be hard to come by with ALS, but writing has helped me keep ... -
RESCUE-ALS Phase 2 Trial Completes Enrollment Ahead of Schedule
Patient enrollment is now complete for the Phase 2 clinical trial of Clene Nanomedicine‘s CNM-Au8 as a ... -
ALS Community Invited to Join Petition Calling on FDA to Approve AMX0035
The ALS Association and I AM ALS have opened a petition calling for the earliest possible approval of ... -
ALS Community Invited to Join Petition Calling on FDA to Approve AMX0035
The ALS Association and I AM ALS have opened a petition calling for the earliest possible approval of ... -
Learning to Pivot When Living With ALS
All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive ... -
Learning to Pivot When Living With ALS
All around me, I’ve been noticing how people, businesses, and organizations are pivoting to survive ... -
Cause of WWII-era ALS Cluster on Guam May Be Younger Cycad Seeds
Younger cycad seeds can contain more toxins than older seeds, and their widespread consumption by ... -
Cause of WWII-era ALS Cluster on Guam May Be Younger Cycad Seeds
Younger cycad seeds can contain more toxins than older seeds, and their widespread consumption by ... -
First Patient Enrolled in Phase 1 Gene Therapy Study in Ireland
A Phase 1 clinical trial of a gene-based therapy for amyotrophic lateral sclerosis (ALS) is now ... -
First Patient Enrolled in Phase 1 Gene Therapy Study in Ireland
A Phase 1 clinical trial of a gene-based therapy for amyotrophic lateral sclerosis (ALS) is now ... -
AMX0035 Safe, Effective in Slowing ALS Functional Decline, Trial Data Shows
Amylyx’s experimental oral treatment AMX0035 safely and effectively slows functional decline in amyotrophic lateral sclerosis (ALS) patients with ... -
AMX0035 Safe, Effective in Slowing ALS Functional Decline, Trial Data Shows
Amylyx’s experimental oral treatment AMX0035 safely and effectively slows functional decline in amyotrophic lateral sclerosis (ALS) patients with ... -
Now, Our Favorite Restaurant Is Inaccessible to All
My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a ... -
Now, Our Favorite Restaurant Is Inaccessible to All
My husband, Todd, and I celebrated our 17th wedding anniversary in late August with a ... -
Phase 3 Study of Oral Edaravone for ALS Resumes Patient Enrollment
The Phase 3 clinical trial testing an oral suspension formulation of edaravone for amyotrophic lateral sclerosis (ALS) has ... -
Phase 3 Study of Oral Edaravone for ALS Resumes Patient Enrollment
The Phase 3 clinical trial testing an oral suspension formulation of edaravone for amyotrophic lateral sclerosis (ALS) has ... -
Going With My Gut
Looking forward to getting a flu shot is something I never thought possible. But at ... -
Going With My Gut
Looking forward to getting a flu shot is something I never thought possible. But at ... -
C9orf72 Mutations Lead to Increased Immune Activity, Mouse Study Suggests
Mutations in the gene C9orf72, a common genetic cause of amyotrophic lateral sclerosis (ALS), cause immune ... -
C9orf72 Mutations Lead to Increased Immune Activity, Mouse Study Suggests
Mutations in the gene C9orf72, a common genetic cause of amyotrophic lateral sclerosis (ALS), cause immune ... -
ILB, Potential ALS Therapy in Phase 2 Trial,Named Orphan Drug in Europe
The European Commission has granted orphan drug designation to ILB, Tikomed‘s investigational treatment for amyotrophic ... -
ILB, Potential ALS Therapy in Phase 2 Trial,Named Orphan Drug in Europe
The European Commission has granted orphan drug designation to ILB, Tikomed‘s investigational treatment for amyotrophic ... -
Prosetin Granted Orphan Drug Designation for ALS
The U.S. Food and Drug Administration has granted Prosetin orphan drug designation for the treatment of ... -
Prosetin Granted Orphan Drug Designation for ALS
The U.S. Food and Drug Administration has granted Prosetin orphan drug designation for the treatment of ... -
Friends Who Can Handle Chronic Illness
In his book “Out of Solitude,” Henri Nouwen writes, “When we honestly ask ourselves which ... -
Friends Who Can Handle Chronic Illness
In his book “Out of Solitude,” Henri Nouwen writes, “When we honestly ask ourselves which ... -
Pharnext’s PXT864 Shows Promising Neuroprotective Effects in ALS, Early Study Shows
Pharnext’s investigational oral combination therapy PXT864 prevents degeneration of motor neurons and their point of ... -
Finding Sweetness in the Eye of the Storm
Just like Lionel Barrymore as James Temple in “Key Largo“ and Gary Sinise as Lt. ... -
Finding Sweetness in the Eye of the Storm
Just like Lionel Barrymore as James Temple in “Key Largo“ and Gary Sinise as Lt. ... -
Health Insurance, Cost of ALS Care Add to Disease Burden in US, Survey Finds
Accessing and understanding insurance coverage, and paying for medical treatments and services top the list ... -
Getting Back to the Basics of Mindfulness
Recently, I noticed I was having problems keeping track of time. Not clock time, as ... -
Getting Back to the Basics of Mindfulness
Recently, I noticed I was having problems keeping track of time. Not clock time, as ... -
UK Program Aims to Help Children of Families Touched by ALS
Two U.K. organizations, the Motor Neurone Disease (MND) Association and Nick Smith Foundation, are partnering on ... -
NurOwn Promotes Immunoregulation, Lessens Inflammation
BrainStorm Cell Therapeutics’ cell-based therapy NurOwn increases the number of immunosuppressive cells and lessens inflammation, ... -
Taking Care of Unfinished Business
“That’s the one project I wish I could have finished,” my husband, Todd, said while ... -
Taking Care of Unfinished Business
“That’s the one project I wish I could have finished,” my husband, Todd, said while ... -
Clinical Research ‘Dashboard’ Brings Latest on ALS Trials to Patients
The nonprofit group I AM ALS has opened a global resource to help keep amyotrophic lateral sclerosis ... -
Learning to Cherish a Room With a View
Last week, I ended this column with a tongue-in-cheek inference that in deference to an ... -
Learning to Cherish a Room With a View
Last week, I ended this column with a tongue-in-cheek inference that in deference to an ... -
Jane Calmes ALS Scholarship Awards Given to 94 Students Across US
The ALS Association has awarded $470,000 in scholarships to 94 students in the U.S. whose ... -
3 New Ways to Stay Energized
What a long, crazy summer it’s been, as we’re living with minimal social interaction and ... -
3 New Ways to Stay Energized
What a long, crazy summer it’s been, as we’re living with minimal social interaction and ... -
Inhibition of RAGE Protein Lessens ALS Symptoms in Mice, Study Finds
Inhibiting the receptor for advanced glycation end products (RAGE) protein lessens the symptoms of amyotrophic lateral ... -
Innovate UK Grant Supports Early Work on Cell Therapy for ALS
Innovate UK has given a grant to Reflection Therapeutics to help fund research into new ways ... -
New ALS Chip Model Closely Mimics Disease, May Aid Research
Researchers report having created a new human-on-a-chip model, one able to more accurately simulate the ... -
Just Showing Up Is an Accomplishment
Years before my husband was diagnosed with ALS, I coordinated a tutoring program in Milwaukee. ... -
Nerve Cell Injury and Chronic Inflammation Need Be Focus of ALS Research
The greater incidence of amyotrophic lateral sclerosis (ALS) among professional athletes and people with head ... -
Is It a Jinx or a Sphinx?
“You don’t tug on Superman’s cape, You don’t spit into the wind, You don’t pull ... -
Seelos to Proceed With Phase 2b/3 Trial Investigating SLS-005 for ALS
Seelos Therapeutics has received a notification from the U.S. Food and Drug Administration (FDA) permitting ... -
Aural Analytics’ Speech Technology Added to HEALEY ALS Platform Trial
Aural Analytics’ speech-based digital technology will be used to measure changes in speech in people ... -
AC Immune Working to Move TDP-43 Antibody Into Clinical Testing for ALS
AC Immune is planning to advance its investigational anti-TDP-43 antibody into clinical testing for neurodegenerative ... -
Paper Explores Whether Lou Gehrig Experienced a Temporary ALS Reversal in 1938
For three weeks during Lou Gehrig’s final season, the baseball legend appeared to shake off ... -
Train Your Eyes to Find the Light
Weeks after my husband’s ALS diagnosis, we were still in shock, but we mustered ourselves ... -
First Patients Enrolled in Pivotal HEALEY ALS Trial of Multiple Therapies
The first platform trial for amyotrophic lateral sclerosis (ALS), designed to assess multiple treatment candidates ... -
Navigating an Uncertain (Lega) Sea
“The world will little note, nor long remember …” These words of Abraham Lincoln were ... -
AstroRx Slows ALS Progression at All Doses Tested, Trial Shows
Kadimastem’s cell therapy candidate, AstroRx, significantly lowers the rate of disease progression in people with amyotrophic ... -
Taming My Runaway Thinking
Racing thoughts, runaway thoughts. Whatever you call ’em, I caught ’em. Yup, a case of ... -
ALS Researchers Probe Cerebrospinal Fluid’s Role in Motor Neurons
The clear, colorless liquid that fills and surrounds the brain and spinal cord in people ... -
Stem Cell Treatment Seen to Safely Aid Speech in ALS Patients in Small Study
Stem cells collected from a patient’s bone marrow and infused into the spinal fluid safely ... -
Study Probes Gut Microbiome Alterations, Probiotics in ALS Patients
The gut microbiome in people with amyotrophic lateral sclerosis (ALS) is altered compared to healthy ... -
Snapshots of Life With ALS
“Thank God I didn’t have to cough this weekend,” my husband, Todd, said after his ... -
Phase 3 Update: Levosimendan Fails to Ease Breathing Problems in ALS Patients
Orion Corporation’s oral therapy levosimendan (ODM-109) failed to preserve lung function and overall functionality in people ... -
Ultrasound Measures of Muscle May Help in Diagnosing, Evaluating ALS
Measurements taken of muscle using ultrasound could be useful in diagnosing or managing amyotrophic lateral sclerosis ... -
Knitting My Way to a Solution for the Chills
Last week, I had the pleasure of joining the Fox Valley/Lakeshore ALS Virtual Support Group ... -
Stress-sensing Molecule May Be Potential Therapeutic Target in ALS
A small molecule called microRNA-182-5p (miR‐182‐5p) is involved in the detection of cell stress and ... -
New FUS Mutation Linked to Aggressive ALS in Teenage Girl
A new mutation in the FUS gene, which results in a shorter version of the FUS protein ... -
Gene Silencing Method Shows Promise to Treat Familial ALS Associated With SOD1 Mutations
A single dose of an artificial microRNA — a tiny RNA molecule that is able ... -
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Common Blood Biomarker Changes Linked to ALS Progression, Study Determines
Changes in commonly tested blood biomarkers in people with amyotrophic lateral sclerosis (ALS) may be ... -
The Absurdity of a Progressively Debilitating Terminal Illness
“Oh, I used to be disgusted and now I try to be amused.” Those lyrics ... -
Tofersen Safe, Appears to Slow Disease Progression in SOD1 ALS Patients, Phase 1/2 Trial Shows
Tofersen, Biogen’s investigational therapy for people with familial amyotrophic lateral sclerosis (ALS) caused by SOD1 gene mutations, was safe ... -
Let’s Go to the Movies
During these past few months, like most folks I know, I’ve been watching movies — ... -
Study Finds Higher Risk of Prolonged Grief Among Bereaved Caregivers of MND Patients
Bereaved caregivers of people with motor neurone disease (MND) are at increased risk of prolonged grief ... -
Slower Progression Seen in US Veterans Living Longer Than Disease Norm
A comparison of amyotrophic lateral sclerosis (ALS) among U.S. military veterans found those who lived ... -
Cancer Immunotherapy Aldesleukin Shows Promise for ALS in Pivotal Trial
Low doses of Clinigen’s aldesleukin, an immunotherapy used in certain types of cancer, safely boosted ... -
Expanding World, Shrinking World
When I was a child, my elderly great-aunt Martha joined my family every Christmas Eve ... -
ALS Association Grant Sustains HudsonAlpha Institute, Crestwood Medical Center Project
The HudsonAlpha Institute for Biotechnology has received a $20,000 ALS Association grant to continue its research ... -
Taking Baby Steps in Search of a Cure
“Baby steps.” That was the advice imparted to Bob Wiley by his psychiatrist, Dr. Leo ... -
microRNA Sequences Work as ‘Fingerprints’ for Early ALS Diagnosis, Study Says
microRNAs found in brain-derived exosomes — microscopic vesicles containing genetic material, proteins and fats shed by cells ... -
Checking In on My Life With ALS During Lockdown
Oh my! We’re still facing challenges brought on by the pandemic and most likely will ... -
Clinigen’s Aldesleukin Earns FDA’s Orphan Drug Designation as ALS Treatment
The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to Clinigen’s aldesleukin for ... -
2 Proteins Seen as Possible ALS Blood Biomarkers
Clusterin, a protein that plays a key role in motor neuron health, and ficolin-3, a ... -
Diagnostic Delays in ALS ‘Surprisingly Large’ and Need Not Be, Study Says
Long delays between symptom onset and diagnosis are common with amyotrophic lateral sclerosis (ALS), and ... -
Making Mental Notes While He’s Still Here
After our second child was born — back when my husband, Todd, had an undiagnosed ... -
QurAlis Licenses Eli Lilly’s Preclinical Compounds That Target Neuronal Excitotoxicity
QurAlis Corporation has licensed preclinical small molecule compounds — designed to treat amyotrophic lateral sclerosis ... -
Eye-tracking Device Gives Voice to ALS Ice Bucket Challenge Co-founder Pat Quinn
For Pat Quinn, co-founder of the ALS Ice Bucket Challenge, everyday communication has become more ... -
Study Examines Barriers to Social Prescribing for People With Motor Neurone Disease
Barriers need to be overcome in order to facilitate community engagement programs for people with ... -
200 ALS Patients Finish Dosing in Phase 3 Trial of NurOwn Cell Therapy
Patient dosing has finished in the pivotal Phase 3 trial assessing the safety and efficacy ... -
Learning How to Help from 5 Phone Calls
Nine months after my husband, Todd, was diagnosed with ALS, he entered a social media ... -
Severe Weight Loss Linked to Higher Risk of Death in Study of Patients
Weight loss at the time of diagnosis appears common among people with amyotrophic lateral sclerosis (ALS), regardless ... -
‘Bar Code’ Identifies Nervous System Cells That May Be Key to Treating ALS
Scientists have identified molecules that enable them to study and manipulate a specific type of ... -
My Cuisine Adventures While Living with ALS
Recently, my husband and I experienced a staycation of sorts — we dined on two ... -
Compound Found in Blackberries Prolongs Lifespan, Reduces Disease Severity in ALS Mice
Protocatechuic acid, a metabolite of one of the main substances that give blackberries and black ... -
Research Aims to Help Advanced ALS Patients Communicate More Easily
A research project underway at the University of Rhode Island (URI) aims to help people ... -
Non-Coding RNA May Serve as Blood-based Biomarker for ALS
Distinct RNA patterns in a person’s blood may signal the presence of amyotrophic lateral sclerosis ... -
An Old Dog Teaches Me New Tricks
I found a walking buddy, and he’s teaching me how to live with my husband’s ... -
Radicava Added to Public Health Plans of Ontario, Brunswick and Alberta
Three Canadian provinces — Ontario, New Brunswick, and Alberta — have added Radicava (edaravone), a treatment for ... -
Oh My God — I Have ALS
The lyrics to “God Shuffled His Feet,” a song by the Canadian band Crash Test ... -
Lifelong Exercise May Limit Brain’s Ability to Adapt in ALS, Study Suggests
Amyotrophic lateral sclerosis (ALS) patients who never regularly engaged in sports or physical activity have ... -
ALS Support Groups Are Going Online
Last week, I joined about 20 other ALS patients in attending an online meeting on ... -
ALS Patients Show Altered Levels of Iron Status Indicators, Study Reports
The levels of certain indicators of iron status, namely ferritin and transferrin, are altered in ... -
NIH Earmarks $25M for Five-year Program Promoting ALS Research
The National Institutes of Health (NIH) is investing $25 million over five years in a ... -
NIH Grant Supports Work Into Cause of TDP-43 Protein Clumps in ALS, Alzheimer’s
The National Institutes of Health (NIH) has awarded a $3.3 million grant to researchers at ... -
Hanging Up the Keys and Other Tough Decisions
I thought my husband, Todd, should quit driving long before he was ready to hang ... -
Caffeine and NAD+ Bolster Health of Motor Neurons From ALS Mouse Model
Caffeine, an antioxidant with neuroprotective properties, was seen to promote the normal development of lab-cultured ... -
‘What’s Love Got to Do With It?’
“Without your love, I’d be nowhere at all. I’d be lost if not for you.” ... -
Global Day 2020 Calls Attention to ALS and Need for Better Care
Each June 21 marks Global Day 2020, 24 hours set aside to heighten awareness of ... -
Researchers Identify New Genetic Defect Linked to ALS
Mutations in the UBQLN2 gene, known to cause amyotrophic lateral sclerosis (ALS), promote the buildup ... -
Studies of DNL747 Paused, Work Shifts to Possibly Better Treatment
Denali Therapeutics and Sanofi announced a pause in clinical testing of their small molecule inhibitor ... -
NEK1 Gene Variants Increase Odds of Developing ALS, Study Finds
Genetic variants of the NEK1 gene that cause the coded protein to lose its function ... -
Caregivers Are Only Human
Ten years ago today, my husband, Todd, was diagnosed with ALS. I’m grateful that our ... -
BrainStorm Awarded $500K from ALS Association, I AM ALS to Support Biomarker Research
The ALS Association and I AM ALS have awarded BrainStorm Cell Therapeutics $500,000 to support ... -
ALS, Before and After
Author T. H. White‘s collection of novels titled “The Once and Future King” depicts the ... -
Tamoxifen Shows Modest Effects in ALS Patients, Phase 1/2 Trial Finds
A cancer treatment called tamoxifen, which previously showed promise in preclinical studies for the treatment ... -
Celebrating 3 Years of ‘Living Well with ALS’
This week, I’m celebrating my third anniversary of writing columns for ALS News Today. This ... -
Woman’s ALS-like Symptoms Linked to Retrovirus in Case Report
Treatment of people whose symptoms are suggestive of amyotrophic lateral sclerosis (ALS) but likely linked ... -
Teeth of ALS Patients Show Odd Metabolism of Metals in Childhood
The teeth of people with amyotrophic lateral sclerosis (ALS) show their bodies metabolize metals — ... -
Results of Phase 3 Trial of NurOwn Cell Therapy Expected by End of Year
The pivotal Phase 3 clinical trial testing BrainStorm Cell Therapeutic’s cell-based therapy NurOwn in amyotrophic ... -
Applying the Science of Happiness to Caregiving
I cried buckets in the months after my husband, Todd, was diagnosed with ALS. When ... -
Statins Not Linked to Earlier Death Among ALS Patients in Registry Study
Statins, often prescribed to lower cholesterol levels, are not associated with poorer overall survival in ... -
Houston, We Have a Problem
The hubbub percolating around the SpaceX launch last weekend reminded me of the role a ... -
Legislation Seeks Early Access to Promising Treatments for ALS, Similar Disorders
Two bills making their way through Congress are intended to improve access to medical therapies ... -
How I Navigate My ‘ALS Time Zone’
During my past 10 years of living with ALS, I’ve had to adapt to a ... -
COVID-19 Challenges ALS Care, But Telemedicine a Vast Opportunity
The COVID-19 pandemic has imposed new challenges on diagnosing, monitoring, and caring for people with ... -
Ventilator Adaptations Crucial for ALS Patients During COVID-19, Scientists Say
For people with amyotrophic lateral sclerosis (ALS) currently on non-invasive ventilation, modifications to existing equipment ... -
RESCUE-ALS Trial Enrolls More Than Half of Patients Ahead of Schedule
The Phase 2 clinical trial investigating Clene Nanomedicine‘s CNM-Au8 as a potentially disease-modifying therapy for people ... -
‘Graves Are for the Living’
On Memorial Day, my mom, the kids, and I visited Lakeside Cemetery in Hancock, Michigan. ... -
Mitsubishi Tanabe Opens Phone Support for Those Interested in Radicava
Mitsubishi Tanabe Pharma America (MTPA) has set up a support program for adults living with amyotrophic ... -
My Face Mask Blocks More Than COVID-19
A large part of successfully living with ALS is to face each challenge with a positive ... -
Arimoclomol Earns FDA’s Fast Track Status for ALS
The U.S. Food and Drug Administration (FDA) has given fast track designation to Orphazyme’s investigational therapy arimoclomol ... -
High Creatinine Kinase Levels Predict Slower Progression in ALS, Study Finds
Levels of creatinine kinase — a marker of muscle damage — are elevated in most amyotrophic lateral ... -
Let’s Just Call It Love
A few years before my husband, Todd, was diagnosed with ALS, he baked a cake ... -
Gut Microbiota Affects Inflammation and Lifespan in ALS, Mouse Study Shows
Changing the composition of bacteria in the gut using antibiotics or fecal transplants may help ... -
A Typical Day in My Life with ALS
“Woke up, fell out of bed, dragged a comb across my head.” These are the ... -
Cerebrospinal Fluid May Transport ALS Toxins, Mouse Study Suggests
The clear, colorless liquid that fills and surrounds the brain and spinal cord may spread ... -
My A-L-S Word Game
Here’s a fun challenge. In the spirit of celebrating ALS Awareness Month, I invite you ... -
Neurotoxin of Blue-Green Algal Blooms May Raise Risk of ALS
Exposure to a neurotoxic molecule produced by blue-green algae seems to raise a person’s odds ... -
Rare Variants in TET2 Gene May Double Person’s Risk of ALS, Similar Ills
Rare variations in the TET2 gene seem to double a person’s risk of multiple neurodegenerative ... -
NurOwn May Curb Damaging Brain Inflammation in ALS Patients, Study Suggests
NurOwn, a cell-based therapy that protects and helps repair nerve cells, also may be able ... -
An Unexpected Delivery Full of Love
As I waited for the postmaster to bring my package to the counter, I tried ... -
ProMIS Creating Intrabodies, Antibodies Targeting Protein Clumps Within Cells
ProMIS Neurosciences announced its program for amyotrophic lateral sclerosis (ALS) is advancing, and scientists were able to ... -
The Monster that ALS Is
Donald Rumsfeld, the former U.S. Secretary of Defense, once stated at a Defense Department briefing ... -
WSU Students Design Mattress to Help ALS Patients Sleep Better
A student bioengineering team at Washington State University (WSU) has designed a mattress to help ... -