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ALS News Today

@alsnewstoday.bsky.social
35 followers 26 following 1.2K posts

Your source for ALS news, support, & real stories from the community. Let's raise ALS awareness together! 🎗️

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ALS News Today @alsnewstoday.bsky.social · 2h
How you process things may change from day to day, and that’s completely normal. #ALS
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ALS News Today @alsnewstoday.bsky.social · 3h
Explore the details: bit.ly/4rTWR6v Common viral infections such as influenza and COVID-19 may accelerate the onset and progression of ALS, a new mouse study suggests. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Common viral infections may lead to faster ALS progression: Study
Common viral infections such as influenza and COVID-19 may accelerate the onset and progression of ALS, a new mouse study suggests.
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ALS News Today @alsnewstoday.bsky.social · 23h
The way you handle today is enough, whatever that looks like. #ALS
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ALS News Today @alsnewstoday.bsky.social · 05/10/2026
The ALS community is mourning the loss of advocate Brooke Eby, who passed away Oct. 1 at age 37. Read more about Brooke’s life and legacy: bit.ly/4AKA0OV #BrookeEby #ALS #ALSAdvocacy #ALSCommunity #ALSNewsToday
Smiling Brooke Eby in a wheelchair; headline: ALS community mourns a woman who shared her ALS journey and founded ALStogether
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ALS News Today @alsnewstoday.bsky.social · 05/10/2026
You’re allowed to acknowledge what today looks like without downplaying it. #ALS
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ALS News Today @alsnewstoday.bsky.social · 04/10/2026
Your experience is part of a wider story that deserves recognition. #ALS
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ALS News Today @alsnewstoday.bsky.social · 04/10/2026
I don’t want to be inspirational. I want to be understood. #ChronicallyIll
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ALS News Today @alsnewstoday.bsky.social · 03/10/2026
You bring something unique to the world that ALS cannot erase. #RareDiseaseCommunity
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ALS News Today @alsnewstoday.bsky.social · 03/10/2026
Your worth isn’t measured in tasks, energy, or output. #ALS
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ALS News Today @alsnewstoday.bsky.social · 02/10/2026
Strength can exist without movement, effort, or action. #ALScommunity
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ALS News Today @alsnewstoday.bsky.social · 02/10/2026
Discover more: bit.ly/4xXL4oW For people with neuromuscular diseases at MDA Engage: Chicago, the biggest takeaway was realizing they are not alone. #ALS #ALSNewsToday #Bionews #ALSCommunity
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MDA Engage: Chicago event sparks new connections, insights
For people with neuromuscular diseases at MDA Engage: Chicago, the biggest takeaway was realizing they are not alone.
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ALS News Today @alsnewstoday.bsky.social · 02/10/2026
Explore the details: bit.ly/46T1T9J Guest writer Cristy Hardin shares how defining friendship took on new meaning when she became a caregiver for a close friend. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Guest Voice: Redefining friendship when ALS entered our lives
Guest writer Cristy Hardin shares how defining friendship took on new meaning when she became a caregiver for a close friend.
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ALS News Today @alsnewstoday.bsky.social · 02/10/2026
There is value in every way you show up #ALSsupport
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ALS News Today @alsnewstoday.bsky.social · 02/10/2026
Explore the details: bit.ly/3VsRE9x Medicinova completed the last patient visit in the placebo-controlled portion of a trial testing MN-166, its experimental treatment for ALS. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Trial testing experimental ALS treatment completes first part
Medicinova completed the last patient visit in the placebo-controlled portion of a trial testing MN-166, its experimental treatment for ALS.
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ALS News Today @alsnewstoday.bsky.social · 01/10/2026
Today holds space for you exactly as you are. #ALSCommunity
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ALS News Today @alsnewstoday.bsky.social · 01/10/2026
Discover more: bit.ly/4jtayXO Advocates are cheering as legislation to renew the ACT for ALS headed to President Trump's desk days before the program is set to expire. #ALS #ALSNewsToday #Bionews #ALSCommunity
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ACT for ALS reauthorization bill awaits president's signature
Advocates are cheering as legislation to renew the ACT for ALS headed to President Trump's desk days before the program is set to expire.
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ALS News Today @alsnewstoday.bsky.social · 01/10/2026
How you show up today is shaped by things most people never see. #RareDiseaseCommunity
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ALS News Today @alsnewstoday.bsky.social · 01/10/2026
Kiersten, who lives with Friedreich’s ataxia (FA), speaks to that unseen exhaustion and why understanding from others can matter. Join the ALS News Today Forums to connect with others affected by ALS: bit.ly/47daX9H #ALS #ChronicIllness #ALSCommunity #ALSNewsToday #Bionews
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ALS News Today @alsnewstoday.bsky.social · 01/10/2026
Explore the details: bit.ly/4hTaM9r A walk past fruit trees reminds columnist Kristin Neva of her father, and she thinks about what will remind her children of their dad. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Love, legacy, and a harvest of memories that fathers leave behind
A walk past fruit trees reminds columnist Kristin Neva of her father, and she thinks about what will remind her children of their dad.
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ALS News Today @alsnewstoday.bsky.social · 30/09/2026
You’re moving through something complex, and it’s okay if your emotions are, too. #ALS
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ALS News Today @alsnewstoday.bsky.social · 30/09/2026
Some moments carry a kind of meaning that only you can define. #ALS
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ALS News Today @alsnewstoday.bsky.social · 30/09/2026
Get the scoop: bit.ly/4AH1QLQ Early rehabilitation and a care team that works together are crucial for helping people with neuromuscular disease stay active and safe. #ALS #ALSNewsToday #Bionews #ALSCommunity
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MDA Engage: Early rehabilitation key for neuromuscular disease
Early rehabilitation and a care team that works together are crucial for helping people with neuromuscular disease stay active and safe.
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ALS News Today @alsnewstoday.bsky.social · 29/09/2026
The way you process today belongs entirely to you. #LivingWithALS
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ALS News Today @alsnewstoday.bsky.social · 29/09/2026
The everyday, challenging moments, such as repositioning in bed, bathing, and waiting for help with the restroom, can be some of the hardest parts of this disease. Your experiences during these times are recognized within this community. #ALS
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ALS News Today @alsnewstoday.bsky.social · 29/09/2026
A computer-based analysis of whole-blood samples identified 10 genes with altered activity that researchers say may have potential as biomarkers for diagnosing and tracking ALS. 🔗 Read more: bit.ly/4hD5DRF #ALS #ALSResearch #ALSNewsToday #Bionews
Researchers identified 10 altered genes as potential diagnostic and tracking biomarkers for ALS.
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ALS News Today @alsnewstoday.bsky.social · 29/09/2026
Explore the details: bit.ly/4iVGUdG Voice Back, an AI app, helps people with ALS and other causes of speech loss communicate using a voice that sounds like their own. #ALS #ALSNewsToday #Bionews #ALSCommunity
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New AI app helps people with ALS keep their own voices
Voice Back, an AI app, helps people with ALS and other causes of speech loss communicate using a voice that sounds like their own.
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ALS News Today @alsnewstoday.bsky.social · 28/09/2026
Caregivers do a thousand invisible things every day. We see you and send a virtual hug your way 🫂 #ALSCaregiver
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ALS News Today @alsnewstoday.bsky.social · 28/09/2026
For parents with ALS: the love you show your kids, even if it comes across differently, still reaches them. #ALS
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ALS News Today @alsnewstoday.bsky.social · 28/09/2026
Over 16 years of living with ALS, Dagmar Munn says she has changed the way she responds when her body does not move the way she expects: bit.ly/4e39UN4 #ALS #LivingWithALS #ChronicIllness #ALSNewsToday #Bionews
Adapting to ALS by embracing a slower pace — "the ALS slow lane" — to reduce fatigue and stop comparing to my former self.
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ALS News Today @alsnewstoday.bsky.social · 28/09/2026
Explore the details: bit.ly/4hAsKMH A progressive decline in lung function is unavoidable in ALS, but there are steps that patients can take to improve breathing issues. #ALS #ALSNewsToday #Bionews #ALSCommunity
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MDA Engage: Patients can take steps to improve breathing issues
A progressive decline in lung function is unavoidable in ALS, but there are steps that patients can take to improve breathing issues.
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ALS News Today @alsnewstoday.bsky.social · 27/09/2026
Families living with ALS learn to manage fear, love, and responsibility all at once. It takes a community’s support, along with immense love and strength. #ALS
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ALS News Today @alsnewstoday.bsky.social · 27/09/2026
Your body is carrying something far heavier than most people understand. This community acknowledges every hurdle you're going through. #ChronicIllness
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ALS News Today @alsnewstoday.bsky.social · 26/09/2026
Your effort counts, even when the outcome looks different than before. #RareDisease
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ALS News Today @alsnewstoday.bsky.social · 26/09/2026
Joy may look different now, but it still matters. #ChronicLife
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ALS News Today @alsnewstoday.bsky.social · 25/09/2026
Families adjusting to ALS build new routines constantly. It’s not easy work, and it’s okay if it feels messy or imperfect. #ALS
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ALS News Today @alsnewstoday.bsky.social · 25/09/2026
Discover more: bit.ly/3TT7da2 Low muscle mass in the arms and legs and sarcopenia were linked to poorer survival in people with ALS in a small prospective study. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Low muscle mass may help predict survival in people with ALS
Low muscle mass in the arms and legs and sarcopenia were linked to poorer survival in people with ALS in a small prospective study.
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ALS News Today @alsnewstoday.bsky.social · 25/09/2026
A targeted treatment for a rare genetic form of ALS has met its main goal in a Phase 3 trial. Read more: bit.ly/3TpqLCD #ALS #ALSTreatment #ALSResearch #ALSNewsToday #Bionews
Headline: Targeted therapy may improve function, survival in FUS‑ALS; notes therapy targeting FUS mRNA improved outcomes.
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ALS News Today @alsnewstoday.bsky.social · 25/09/2026
You deserve moments of ease wherever they can be found. Wishing you some gentleness today. #ALS
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ALS News Today @alsnewstoday.bsky.social · 24/09/2026
It’s understandable if your thoughts move in directions you didn’t expect. #ALS
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ALS News Today @alsnewstoday.bsky.social · 24/09/2026
Take a closer look: bit.ly/46Ie6Os Columnist Kristin Neva takes note of the changing seasons with an initial sense of dread, then refocuses on the good things that also come. #ALS #ALSNewsToday #Bionews #ALSCommunity
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ALS News Today @alsnewstoday.bsky.social · 24/09/2026
Your way of navigating today doesn’t have to look like anyone else’s. #ALS
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ALS News Today @alsnewstoday.bsky.social · 24/09/2026
Discover more: bit.ly/4d3W4tt Phase 3 FUSION results suggest a targeted therapy may slow disease progression in FUS-ALS, with benefits seen versus placebo. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Therapy may slow disease progression in people with FUS-ALS
Phase 3 FUSION results suggest a targeted therapy may slow disease progression in FUS-ALS, with benefits seen versus placebo.
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ALS News Today @alsnewstoday.bsky.social · 24/09/2026
“While scrolling through social media the other day, I came across a question that stopped me in my tracks: How has having ALS impacted your life for the better?” -Dagmar Munn Continue with this reading: bit.ly/47evVoo #ALS #LifeWithALS #ALSDiagnosis #ALSNewsToday #Bionews
Dagmar, a woman seated in a meeting room holding up a green-blue lacy knitted shawl.
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ALS News Today @alsnewstoday.bsky.social · 23/09/2026
The impact you’ve had on people is woven into their lives in lasting ways. #ALSCommunity
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ALS News Today @alsnewstoday.bsky.social · 23/09/2026
Get the scoop: bit.ly/4xNkXRH ALS disrupted her relationship with her body, so columnist Dagmar Munn developed small, intentional habits to restore her confidence. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Building small habits through exercise to stay strong with ALS
ALS disrupted her relationship with her body, so columnist Dagmar Munn developed small, intentional habits to restore her confidence.
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ALS News Today @alsnewstoday.bsky.social · 23/09/2026
A legacy isn’t built from accomplishments, it’s built from how you make people feel. #SpoonieSupport
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ALS News Today @alsnewstoday.bsky.social · 23/09/2026
Take a closer look: bit.ly/3VMK4qj Mouse model study finds molecular changes in inflammation, RNA, and protein processing before ALS symptoms appear. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Molecular changes appear before ALS symptoms in mouse model
Mouse model study finds molecular changes in inflammation, RNA, and protein processing before ALS symptoms appear.
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ALS News Today @alsnewstoday.bsky.social · 22/09/2026
Post-rest can still feel exhausting when your body doesn’t recover the way it used to. #ChronicFatigue
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ALS News Today @alsnewstoday.bsky.social · 22/09/2026
Explore the details: bit.ly/4cXwy9l ALS may change what marriage looks like for guest columnist Nancy Muirhead and her husband, but it cannot change their love. #ALS #ALSNewsToday #Bionews #ALSCommunity
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Guest Voice: Love protects our marriage in the ‘Suffering Wars’ of ALS
ALS may change what marriage looks like for guest columnist Nancy Muirhead and her husband, but it cannot change their love.
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ALS News Today @alsnewstoday.bsky.social · 22/09/2026
Some connections leave a mark that time can’t undo. #RareDisease
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