Spike Lee steps in to help woman with ALS complete final bucket list wish “Not every day is good, but there is something good in every day.”

#SpikeLee steps in to help woman with #ALS complete final #bucketlist wish

www.upworthy.com/spike-lee-st...

ALS 환자도 무대 위로, 뇌파 기술이 만든 디지털 아바타의 마법 - 천의무봉 루게릭병(ALS)으로 춤을 출 수 없게 된 무용수가 다시 무대 위에서 자신만의 퍼포먼스를 선보였다는 소식이 들려왔습니다. 뇌파를 이용해 디지털 아바타를 조종하는 기술이 신체적 제약을 넘어 예술적 자아를 어떻게 회복시켰는지 살펴보겠습니다.

ALS 환자도 무대 위로, 뇌파 기술이 만든 디지털 아바타의 마법

https://bit.ly/4cgKrhH

#루게릭병 #뇌파기술 #디지털아바타 #무용 #기술과예술 #ALS #BrainComputerInterface

Who is finding a cure for #ALS, a devastating diagnosis that is 100% fatal? On this episode of @powerstation.bsky.social station podcast I talk to @andreagoodman.bsky.social, the powerhouse CEO of @iamals.bsky.social about the patient-led advocacy that will end this disease. apple.co/4chJl5o

Contribute to the talk: https://bit.ly/3XodI2L

#ALS #ALSNewsToday #Bionews #LifeWithALS #Rollator

“I’m tired” can mean far more than people realize. 

#ALS

Read about ALS fatigue: https://bit.ly/3WJuQQh

From pacing your day to adjusting routines, small changes can help preserve energy and peace of mind.

#ALSNewsToday #ALSCommunity #ALS #AmyotrophicLateralSclerosis #FatigueAwareness #ALSSymptoms #ALSResearch #RareDiseaseCommunity #Bionews

This National Siblings Day, we honor the siblings who step into the role of caregiver for loved ones living with ALS. 💙

From lifelong bonds to unwavering support, siblings show up with strength, compassion, and love—every single day.
 
#ALSUnited #NationalSiblingsDay #TogetherWeEndALS #ALS

Leave a ♥️ in the comments if you believe love doesn’t fade - it just changes shape and keeps moving forward

#ALS

April is Volunteer Month! We would like to spotlight our amazing Walk ALS volunteers. Without volunteers, our events wouldn't be possible! Thank you!
#ALS #WalkALS #VolunteerMonth #ALSUnited

Mental health is critical: https://bit.ly/3MOay6Q

Living with ALS can bring emotional challenges for both patients and caregivers. Support, therapy, and coping tools can play an important role in overall well being.

#ALS #MentalHealth #RareDisease #Bionews #ALSNewsToday

@scholten.house.gov Representative Scholten, please cosponsor this bill! 🙏 #ALS #EndALS

A picture of the US Capitol building behind a red banner reading "Breaking News! Act for ALS reintroduced!" in white lettering. The ALS Association logo is in the bottom right hand corner in red and white.

🙏Tell your Rep: ensure continued research & access for those with #ALS als.quorum.us/campaign/ACT...

This week the ACT for ALS Reauthorization Act was officially reintroduced in Congress

On Wed, April 15 at 10:15 AM ET the House Energy & Commerce Committee will hold a hearing on this critical bill

Two of the researchers behind the AI model, Jacob Vogel and Lijun An, show the results of their study. Photo: Emma Nyberg.

New AI model can detect multiple cognitive brain diseases from a single blood sample www.lunduniversity.lu.se/article/new-...

#Alzheimers #dementia #Parkinsons #ALS #FTD #stroke #science #NeuroSkyence #AI

Eric Dane te zien in nieuwe documentaire over ALS De overleden Amerikaanse acteur Eric Dane is binnenkort te zien in de korte documentaire Ring Every Bell, over de spierziekte ALS. Dat meldt The Hollywood Reporter. Dane, vooral bekend door zijn rollen in de hitseries Grey's Anatomy en Euphoria, overleed op 19 februari op 53-jarige leeftijd aan de gevolgen van de ziekte.

🕗 08:00 | RTL Nieuws
🔸 #ALS #Hollywood #USA #Overleden #Documentaire

Study finds rare gene variants linked to increased ALS risk in a large international genetic analysis

New ALS insight: https://bit.ly/4mjeXMs

New research is helping expand what we understand about ALS.

#ALS #ALSCommunity #RareDisease
#ALSNewsToday #Bionews

Disease Connections: FTD, ALS, and Alzheimer’s | American Brain Foundation Learn how Alzheimer’s and ALS-FTD spectrum disorders are connected and how research into one neurodegenerative disease can lead to advancements in many others.

#ALS and #FTD are so closely related that scientists now refer to both as part of the ALS-FTD spectrum. Learn more in this updated blog post, which includes recent discoveries and references ABF-funded researchers currently investigating these diseases ➡️ buff.ly/EXNHzfi

Make mealtime easier with ALS: https://bit.ly/3KtLxMQ

As ALS progresses, everyday tasks like eating can become more challenging. Adaptive utensils, plates, cups, and bowls are designed to help.

#ALS #ALSawareness #LouGehrigsDisease #AdaptiveLiving #ALSNewsToday #Bionews

Four graphs show 'PrimeC' and 'Placebo' effects over time. Graph A: NFL geometric mean ratio to baseline, with GMR@1. 99 and GMR@2. 91 labels. Graph B: Ferritin mean concentration. Graph C: Transferrin mean concentration levels. Graph D: miRNA differential expression.

PrimeC demonstrated comparable safety to placebo and showed slowed functional decline, reduced ALS-related complications, and modulation of iron-regulatory and microRNA biomarkers in adults with #ALS over 18 months of treatment.

ja.ma/3ObSGDw

🎓 This seminar spotlights learners in New Bilibid Prison engaging in the Alternative Learning System (ALS). Inside one of the world's most overcrowded prisons, education becomes a gateway to hope, dignity & reintegration.

Themes: Reformation · Redemption · Reintegration
#ALS #NonFormalEducation

I’m still alive with #als

Amyotrophic Lateral Sclerosis (ALS): Causes, Symptoms, Diagnosis, Treatment
#ALS #Neurology #Neurodegenerative #MedicalEducation #iPrkashMishra

Kristin and Todd's 15-Year Reflection: https://bit.ly/4lHgD0b

#ALSNewsToday #SlowProgression #ALS #Bionews

Lend your insight: https://bit.ly/4hOnDYO

#ALS #ALSNewsToday #Bionews #LifeWithALS

Some days I mourn. Some days I find moments of peace. Often it’s both.

#ALS

🌍 World Health Day | April 7

At ALS United Rocky Mountain, we stand with science—advancing research and care to bring hope to those living with ALS.

💙 Stand with science.
💙 Support research.
💙 Be part of the movement.

#WorldHealthDay #ALSUnited #ALSCommunity #ALS

Tell Congress: Increase ALS Research to Find a Cure! Contact your Members of Congress today and urge them to protect and increase ALS research funding.

I just asked my reps to reject cuts to medical research & #ALS funding🙏

Trump's 2027 budget proposed $5 billion cut to National Institutes of Health - leading federal funder of ALS research. These cuts jeopardize research, clinical trials & data systems that are essential to finding new treatments.

PrimeC combines celecoxib and ciprofloxacin in a sustained-release formulation and targets the pathogenic mechanisms of #ALS. In a Phase 2 trial, the treatment demonstrated good tolerability and showed signs of potential clinical benefit. In @jamaneurology.com:
jamanetwork.com/journals/jam...

PrimeC kombiniert Celecoxib+Ciprofloxacin in einer Retardformulierung und zielt auf pathogenetische Mechanismen der #ALS. In einer Phase-2-Studie zeigte die Therapie gute Verträglichkeit + Hinweise auf einen möglichen klinischen Nutzen.
www.dgn.org/artikel/prim...

ALS motor phenotypes: a revised ‘OPM’ classification Defining motor phenotypes in amyotrophic lateral sclerosis (ALS) is important for individualized care and optimal therapeutic trial design. The “ALS-OPM” classification is based on the onset region...

🧠 New paper: revised OPM sharpens ALS motor phenotyping for clinic, natural history studies, and trials. More structure, more precision, more comparability. #ALS #ALSResearch #OPM #ALSOPM www.tandfonline.com/doi/full/10....

Sharing fears with other ALS caregivers can help us feel less alone After her late husband's ALS diagnosis, columnist Juliet Taylor connected with other caregivers who provided support and guidance.

“Hearing from others who’d lived through those same emotions and could both normalize them and offer practical advice felt like the ultimate gift of empathy and compassion” -Juliet Taylor: https://bit.ly/44bgFI2

#ALS