ALS News Today

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

[ALS News Today @alsnewstoday]

ALS clinical trial update: https://t.co/3MxyPCesjP

The HEALEY ALS Platform Trial is expanding enrollment for the NUZ-001 treatment arm from 160 to 240 participants, a move researchers say could strengthen the data and potentially lead to earlier top-line results.

NUZ-001 is an investigational ALS therapy designed to target the mTOR pathway and help reduce the buildup of toxic proteins that may contribute to nerve cell damage in amyotrophic lateral sclerosis. Researchers hope the larger study population will provide additional insights into treatment responses and biomarkers while maintaining the trial’s primary goals.

#ALS #AmyotrophicLateralSclerosis #ALSResearch #ALSClinicalTrial #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

Illness life: where “I’m fine” can mean “I’m doing my best to hold on.” 

#ChronicIllness

[ALS News Today @alsnewstoday]

Understanding MRI and ALS: https://t.co/INiHGABlfo

Researchers are studying advanced MRI methods to spot the disease earlier and to follow how it progresses over time. These imaging tools may also help improve future clinical trials and treatment planning.

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[ALS News Today @alsnewstoday]

"The weeks immediately following my late husband’s ALS diagnosis were the scariest and most unsettling of my life. Even with Jeff’s physical symptoms pointing toward ALS, nothing could’ve prepared us to actually hear those words when they were delivered in a windowless examination room in Baltimore, in November 2018.

In many respects, those initial days of shock and despair were more difficult than any that followed. Jeff and I each retreated in separate ways, individually processing this horrible twist of fate in our otherwise ordinary and happy life together. Jeff was contemplative and quiet, spending hours sitting alone in the cold on a wrought-iron patio chair overlooking the water. I, on the other hand, took to the woods with our dog Rudder. I walked and sobbed every day for about three weeks. In many moments, I couldn’t catch my breath. I felt scared, helpless, and very alone.

I understood, too, that if I was feeling this degree of fear and anguish, Jeff’s was likely far worse. I couldn’t reconcile how this rugged and vibrant man could be living with a terminal neuromuscular disease, and how he must be feeling. Life in the weeks immediately following his diagnosis felt like a nightmare from which neither of us could wake up.

While every person and family handles an ALS diagnosis in their own way, I have learned that despair and disbelief are, understandably, common immediate emotions. Musician Mat Kearney expresses the feeling well in a song called ‘Closer to Love,’ singing, ‘I guess we’re all one phone call from our knees.’ While I was moved by the song even before ALS entered our lives, afterward, I fully understood." -Juliet Taylor

Continue reading: https://t.co/4kL8ZFY8kf

#ALS #LifeWithALS #ALSDiagnosis #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

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

#ALS

[ALS News Today @alsnewstoday]

I used to live by goals. Now I live by what is possible.

#ChronicIllnessWarrior

[ALS News Today @alsnewstoday]

"After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either.

This is hard to write, but even harder to own. Asking for help used to be difficult for me. In a performance review, a supervisor once gently said to me, ‘Seek help when you need it. People want to help others. It feels good.’

At first, that advice didn’t make sense. People were busy and had their own responsibilities. Asking for help felt like an imposition, an admission that I was struggling to handle things or was incapable of doing so. While I did work to accept my boss’ advice, I continued to soldier on independently whenever I could; I still struggled with feeling like I was putting someone out.

My independent streak ended abruptly on the day Jeff was diagnosed with ALS via second opinion in a windowless exam room in Baltimore. I’d been hoping that some as-yet-unknown reason was causing his foot drop and slurred speech, but when his diagnosis was confirmed, my heart dropped into my stomach, my breathing became ragged, and I felt immediate panic. I knew that day that Jeff and I — two people who were bad at accepting help — were going to need heaps of it.

 Both of us needed help, but differently" -Juliet Taylor

Continue reading this reflection: https://t.co/GQewydC1Gg

#ALS #LifeWithALS #Caregiver #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

Northwestern researcher Hande Ozdinler believes future progress in ALS treatment may come from understanding the disease’s many moving parts rather than searching for one “miracle drug” approach. Her work focuses on how different systems in the brain and body interact in ALS and how therapies may eventually need to target multiple pathways at once: https://t.co/5oDPi4WAF3

The research reflects a growing shift toward more personalized and multi targeted approaches to ALS treatment development as scientists continue learning more about how complex the disease really is.

#ALS #ALSResearch #Neuroscience #ALSAwareness #Bionews

[ALS News Today @alsnewstoday]

“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://t.co/0CnpZSVpTP

#ALS

[ALS News Today @alsnewstoday]

“Each of us develops our own means of coping with heartbreak” -Juliet Taylor: https://t.co/FZGyoGo4R1

#ALS

[ALS News Today @alsnewstoday]

"I was enchanted on the first date with my late husband, Jeff, when our conversation turned to work. It’s an odd thing to say, because we can be conditioned to believe that work should be a less important aspect of our lives. But what I noticed in Jeff was a spark as he began sharing about the moving, impactful, and even funny things he’d seen during his career.

Jeff was an agent for the Bureau of Alcohol, Tobacco, Firearms, and Explosives (ATF), and before that for the Federal Bureau of Investigation. In his nearly 30 years with these agencies, he’d worked all over the world, playing a role in some of the most compelling stories I’d heard on the news.

He loved his job, and I loved the passion he felt for it. I relished meeting his work friends, who over the years really became like brothers and sisters to him. I enjoyed his pride at being one of the White House employees (working for two administrations, on both sides of the aisle, in a nonpartisan role) who gave the most tours to family and friends. But mostly, I was proud of how he cared for people. His job was about safety and security, and he took this seriously.

My own career has always been in the field of communications, which, while rewarding, certainly lacks the intrigue of being a federal law enforcement agent. The variety in our careers, though, and our mutual passion for them, was a source of bonding for us. We never tired of talking about our respective interest in our jobs." -Juliet Taylor

Continue with this reading: https://t.co/CZuyKJ4cqt

#ALS #LifeWithALS #RareDiseaseStories #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

This experience has many layers, and you’re navigating them the best way you can.

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[ALS News Today @alsnewstoday]

Caregiving for someone living with ALS often comes with a steep emotional and practical learning curve. Many caregivers suddenly find themselves navigating medical routines, communication changes, mobility support, emotional exhaustion, advocacy, uncertainty, and responsibilities they never expected to carry: https://t.co/Z294mdgXlk

This discussion invites caregivers, loved ones, and families to share the advice, lessons, or perspectives they would give someone who is brand new to caregiving for a person living with ALS.

Join the conversation and explore more community perspectives at the link above.

#ALSCaregiver #CaregiverSupport #ALS #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

How you process things may change from day to day, and that’s completely normal.

#ALS

[ALS News Today @alsnewstoday]

What did you think of ALS Awareness month? Did anyone find it overwhelming? Comforting? Exciting? All of these and more? Share with us: https://t.co/AtIDGCl9sX

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[ALS News Today @alsnewstoday]

Understanding possible causes: https://t.co/MfvS5tcL0j

ALS is believed to arise from a mix of genetic and environmental influences, though the exact cause(s) remains unknown.

#ALS #ALSResearch #ALSRiskFactors #ALSAwareness #RareDisease #Neurology #Bionews #ALSNewsToday

[ALS News Today @alsnewstoday]

"’The phrase “bucket list,’ which has become popular in today’s culture, refers to a set of experiences or activities a person hopes to accomplish before dying. These might include visiting the Grand Canyon and skydiving, for example. While it was further popularized by the 2007 movie of the same name, etymologists suggest it’s been in use for far longer.

When my late husband, Jeff, was diagnosed with ALS in 2018, compiling or completing a bucket list was the furthest thing from our minds. We weren’t thinking about attacking life with gusto, and he wasn’t ruminating on all the things he hadn’t yet had a chance to do. Rather, we were shocked and saddened by the news, even though by the time he was diagnosed, we were expecting it. It wasn’t a time to rack up experiences, but rather a time to process our desperation and grief.

It’s often said that acceptance is a stage of grief, but I don’t know that Jeff or I, or anyone who loved him, ever accepted his ALS. As a family, we understood that ALS would cut short the decades more of life together that we wanted. And, of course, that led to changes in how we lived and spent our time." -Juliet Taylor

Take a moment to read the full reflection: https://t.co/prcMyUXotz

#ALS #LifeWithALS #RareDisease #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

The way you handle today is enough, whatever that looks like.

#ALS

[ALS News Today @alsnewstoday]

ALS communication technology is advancing as researchers in the Netherlands prepare to test a fully implantable brain computer interface (BCI) designed to help people with ALS communicate using brain activity alone: https://t.co/RfCWoFsar1

The experimental system aims to support independent communication in real world home settings, addressing one of the most challenging aspects of ALS as speech and communication abilities become affected.

Researchers hope the study will provide valuable insight into whether brain computer interface technology can help restore communication and speech for people living with ALS while supporting future development of these devices.

#ALS #ALSResearch #AssistiveTechnology #ALSNewsToday #Bionews

[ALS News Today @alsnewstoday]

Receiving an ALS diagnosis can sometimes take months or even years, especially when early symptoms are subtle, inconsistent, mistaken for other conditions, or difficult to explain. Many people go through long periods of uncertainty before finally getting answers: https://t.co/mprJeqpXaw

Delayed diagnosis can affect emotional wellbeing, treatment planning, work, relationships, and trust in the medical process. Experiences vary widely depending on symptoms, access to specialists, testing, and how progression first appeared.

If your ALS diagnosis was delayed, what do you believe was the main reason?

#ALSDiagnosis #ALS #LifeWithALS #ALSNewsToday #Bionews