Videos
Healey ALS MyMatch: Overview & Update
01:03:26
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School
Dr Babu discussed:
• Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design.
• Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies.
• What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future.
• What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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Healey ALS MyMatch: Overview & Update
01:03:26
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School
Dr Babu discussed:
• Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design.
• Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies.
• What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future.
• What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
YFgWywhG8No
Palliative Care for ALS: What is it? How can it help? How to access it?
01:06:37
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Kara Bischoff, Associate Division Chief for Outpatient Palliative Care and the Medical and Director of the Outpatient Palliative Care Service at University of California, San Francisco (UCSF).
Dr Bischoff discussed:
• What palliative care truly is — and how it supports people living with ALS and their families
• Common myths and misconceptions, including why palliative care is not the same as hospice
• How a palliative care team works alongside an ALS care team to improve quality of life, communication, and decision-making
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #palliativecare #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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Updates on ALS Clinical Trials from Regeneron and VectorY
01:17:41
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Oren Levy, Medical Director, Early Clinical Development, Regeneron Pharmaceuticals and Dr. Olga Uspenskaya-Cadoz, Chief Medical Officer, VectorY Therapeutics.
Drs Levy and Uspenskaya-Cadoz discussed:
• Progress on a new siRNA therapy for SOD1-ALS, focused on slowing disease progression through precision targeting (Dr. Levy).
• Vectory Therapeutics introduced VTX002, an innovative gene therapy aimed at TDP43, advancing global trials that could redefine ALS treatment.
• Both speakers emphasized collaboration, biomarkers, and patient-driven innovation as key to accelerating breakthroughs in ALS research.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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Healey ALS MyMatch: Overview & Update
01:03:26
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School
Dr Babu discussed:
• Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design.
• Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies.
• What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future.
• What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
YFgWywhG8No
Healey ALS MyMatch: Overview & Update
01:03:26
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Suma Babu, Co-Director, Neurological Research Institute, Massachusetts General Brigham and Associate Professor of Neurology, Harvard Medical School
Dr Babu discussed:
• Big picture: This talk introduced Healey ALS MyMatch, a new approach to running faster, smarter early-phase ALS clinical trials by focusing on biology, biomarkers, and patient-centered design.
• Why it matters: MyMatch aims to reduce trial delays, improve access, and increase the chances of identifying promising treatments by better matching people living with ALS to the right studies.
• What’s happening now: The program has already launched its first trial and is building a growing pipeline of additional therapies, with more studies expected in the near future.
• What participants should know: MyMatch is designed for people with ALS who meet specific eligibility criteria, while expanded access programs and other pathways remain important options for those who do not qualify.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts #HealeyMyMatch
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
YFgWywhG8No
Palliative Care for ALS: What is it? How can it help? How to access it?
01:06:37
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Kara Bischoff, Associate Division Chief for Outpatient Palliative Care and the Medical and Director of the Outpatient Palliative Care Service at University of California, San Francisco (UCSF).
Dr Bischoff discussed:
• What palliative care truly is — and how it supports people living with ALS and their families
• Common myths and misconceptions, including why palliative care is not the same as hospice
• How a palliative care team works alongside an ALS care team to improve quality of life, communication, and decision-making
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #EverythingALS #ALSCommunity #palliativecare #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
a37AN67lkwg
Updates on ALS Clinical Trials from Regeneron and VectorY
01:17:41
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Oren Levy, Medical Director, Early Clinical Development, Regeneron Pharmaceuticals and Dr. Olga Uspenskaya-Cadoz, Chief Medical Officer, VectorY Therapeutics.
Drs Levy and Uspenskaya-Cadoz discussed:
• Progress on a new siRNA therapy for SOD1-ALS, focused on slowing disease progression through precision targeting (Dr. Levy).
• Vectory Therapeutics introduced VTX002, an innovative gene therapy aimed at TDP43, advancing global trials that could redefine ALS treatment.
• Both speakers emphasized collaboration, biomarkers, and patient-driven innovation as key to accelerating breakthroughs in ALS research.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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Signals from the Outer Limits – What I’ve Learned from Slow Progressors and ALS Reversals
01:30:15
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Richard Bedlack, Stewart, Hughes, and Wendt Distinguished Professor, Professor of Neurology at Duke University, Associate of the Duke Initiative for Science & Society, and Faculty Network Member of the Duke Institute for Brain Sciences.
Dr. Bedlack dives into:
• What ALS reversals teach us about potential recovery and resilience.
• How studying these rare cases can reveal new insights for future treatments.
• His unique, optimistic approach to research that challenges conventional thinking about ALS.
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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ALS BioBanking in the 21st Century
Welcome to another compelling episode of #ExpertTalk by EverythingALS!
In this session, we’re joined by Dr. Brent Harris, Professor in the Departments of Neurology and Pathology at Georgetown University. He shares critical insights into the future of ALS biobanking — how cutting-edge tissue collection and analysis are driving breakthroughs in ALS research and patient care.
Dr. Harris dives into:
How biobanking advances our understanding of ALS
The power of brain and tissue donation in accelerating discovery
Innovative research shaping next-generation ALS therapiesI
📲 Download the EverythingALS App:
– Google Playstore: http://bit.ly/4nXqIYy
– App Store: https://bit.ly/42tPBmh
Follow EverythingALS:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
#ExpertTalk #ALSResearch #ALSBiobanking #ALSClinicalTrials #EverythingALS #ALSCommunity #NeurodegenerativeDiseases #PatientCenteredResearch #ALSAdvocacy #CollaborativeScience #ALSNetwork #MotorNeuronDisease #ALSUpdates #ALSExperts
🔔 If you’re passionate about advancing ALS care and research — like, subscribe, and turn on notifications.
Share this episode to raise awareness and support for the ALS community.
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#ExpertTalk: Targeting an Endogenous Retrovirus as a Therapeutic Approach to ALS
Welcome to another enlightening #experttalk by the EverythingALS, where we delve into cutting-edge research and innovative approaches to combating #ALS (Amyotrophic Lateral Sclerosis).
This discussion dives into the science behind endogenous retroviruses (ERVs), their role in neurodegenerative diseases, and how understanding them could pave the way for innovative treatments for ALS.
🕒 Timestamps
0:00 – Introduction
Meet the speakers and an overview of the session.
3:45 – Understanding Endogenous Retroviruses
What are ERVs, and why are they significant in neurodegenerative diseases?
10:20 – The Role of ERVs in ALS Pathology
How ERVs influence ALS development and progression.
20:15 – Innovative Therapeutic Strategies
Exploring cutting-edge research and treatment possibilities targeting ERVs.
30:50 – Q&A with the Experts
Addressing audience questions and discussing the future of ALS therapies.
40:25 – Closing Remarks
Final insights and takeaways from the session.
👩🔬 About EverythingALS:
EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.
📩 Stay Connected:
Subscribe to our channel and turn on notifications to stay updated on the latest expert talks and research breakthroughs in ALS.
💡 Don’t forget to:
✅ Like this video if you found it helpful!
✅ Subscribe to our channel for more expert talks and updates: [EverythingALS YouTube Channel].
✅ Share this video to spread awareness and support ALS research.
📌 For more resources and to participate in EverythingALS initiatives, visit: everythingals.org
#ALS #EndogenousRetrovirus #ALSResearch #TherapeuticApproach #EverythingALS #Neurodegeneration
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Three Molecular Subtypes of ALS: #ExpertTalk with Dr. Molly Gale Hammell
In this episode of the EverythingALS Expert Talk Series, Dr. Molly Gale Hammell, Associate Professor at the Institute for Systems Genetics, NYU Langone Medical Center, explores the three molecular subtypes of ALS — stress, inflammation, and TDP-43 pathology. She shares insights into how these distinct pathways contribute to ALS progression and potential avenues for targeted treatments.
⏱ Timestamps:
00:00 – Introduction
02:15 – Understanding ALS at a molecular level
05:40 – The role of cellular stress in ALS
12:20 – Inflammation and its impact on disease progression
18:45 – TDP-43 pathology: Key mechanisms and implications
25:10 – Potential therapeutic strategies
30:00 – Q&A and audience discussion
About EverythingALS:
EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.
Stay Connected:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: https://www.linkedin.com/everythingals
► Facebook: https://www.facebook.com/EverythingALS
► Subscribe for more Expert Talks: https://www.youtube.com/c/everythingals
Don’t forget to:
✅ Like this video if you found it helpful!
✅ Subscribe to our channel for more expert talks and updates: [EverythingALS YouTube Channel].
✅ Share this video to spread awareness and support ALS research.
#ALS #MolecularSubtypes #TDP43 #Neurodegeneration #EverythingALS #ExpertTalk
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Revolutionizing ALS Research: ALL ALS & You!
This #experttalk, hosted by EverythingALS, explores how cutting-edge technology, data-driven research, and community engagement are accelerating the fight against ALS. The discussion highlights the ALL ALS initiative and how individuals can contribute to groundbreaking research.
⏱ Timestamps:
00:00 – Introduction
01:15 – What is ALL ALS?
04:30 – The Power of AI & Technology in ALS Research
08:20 – Community-Driven Research & Patient Participation
12:45 – Breakthroughs & Key Findings
16:30 – How You Can Get Involved
20:00 – Q&A & Closing Thoughts
About EverythingALS:
EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.
Stay Connected:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: / everythingals
► Facebook: / everythingals
► Subscribe for more Expert Talks: / everythingals
Don’t forget to:
✅ Like this video if you found it helpful!
✅ Subscribe to our channel for more expert talks and updates: [EverythingALS YouTube Channel].
✅ Share this video to spread awareness and support ALS research.
#ALS #MolecularSubtypes #TDP43 #Neurodegeneration #EverythingALS #ExpertTalk
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Repeat Associated Non-AUG (RAN) Proteins as Therapeutic Targets for C9orf72 ALS/FTD
Join us for an insightful session with Laura P.W. Ranum, Ph.D., as she discusses how Repeat Associated Non-AUG (RAN) proteins play a role in C9orf72 ALS/FTD and their potential as therapeutic targets. This talk is part of the EverythingALS Expert Talk Series, bringing you the latest research and advancements in ALS and neurodegenerative diseases.
⏱ Timestamps:
⏱️ 00:00 – Introduction to EverythingALS & Speaker Bio
⏱️ 02:15 – Understanding C9orf72 ALS/FTD: The Basics
⏱️ 05:40 – What Are RAN Proteins?
⏱️ 12:30 – How RAN Translation Contributes to ALS/FTD
⏱️ 18:45 – Targeting RAN Proteins for ALS Therapy
⏱️ 25:10 – Research Updates & Clinical Implications
⏱️ 32:20 – Q&A with Dr. Laura P.W. Ranum
💡 Why This Matters:
C9orf72 mutations are the most common genetic cause of ALS and FTD. Understanding RAN proteins could open new doors for therapeutic strategies to combat these devastating diseases.
About EverythingALS:
EverythingALS is a patient-focused nonprofit organization dedicated to accelerating the discovery of treatments and a cure for ALS through collaboration, innovation, and empowering patients and researchers.
Stay Connected:
► Website: https://www.everythingals.org
► Twitter: https://x.com/everything_als
► LinkedIn: / everythingals
► Facebook: / everythingals
► Subscribe for more Expert Talks: / everythingals
#EverythingALS #ALSResearch #Neurodegeneration #C9orf72 #RANProteins #LauraRanum #ALS #FTD
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