It’s often thought that ALS only affects older, white men. The reality is that an entire community of women are currently living with ALS and they’re working hard to change this misunderstanding and build awareness that this disease can impact everyone. When women are diagnosed with ALS, it is a unique experience with specific challenges […]
The ALS Research Collaborative (ARC) and ARC Data Commons Discussion and demo led by Dr. Fernando Vieira Thursday, April 6, 2023 | 3:00 - 4:00pm EDT On Thursday, April 6, 2023 at 3:00 pm ET, join a special ALS TDI Town Hall to hear Dr. Fernando Vieira, CEO and CSO at ALS TDI, provide an overview […]
Prof Guillaume Hautbergue is an expert in RNA biology and he and his lab recently published on a peptide that was able to prevent the death of nerve cells and protect them from degeneration in C9orf72-ALS/FTD animal models. He also recently reported a gene therapy approach targeting the same biological process. More Information: https://www.sheffield.ac.uk/neuroscience-institute/news/scientists-discover-how-prevent-death-nerve-cells-most-common-genetic-forms-mnd-and-dementia
Intimacy and ALS Led by members of the ALS community Tuesday, April 18, 2023 | 5:30 - 7:00pm EDT From dating and relationships to sexuality and your sex life, ALS changes a lot. This special 1.5-hour-long ALS Town Hall will attempt to cover the many ways that intimacy can be affected by ALS, while also discussing how […]
About the Event Dr. Ajami is an Assistant Professor of Immunology and Behavioral and Systems Neuroscience at OHSU. Her research is focused on how immune cells provokes the pathology in different neurodegenerative diseases. Her work aims at describing immune pathways that leads to the damage to the brain tissue and ultimately discover the molecules that […]
Title: ALS Exercise Date: Thu, Apr 20, 2023, 12:00 PM - 1:00 PM CDT Registration link: https://attendee.gotowebinar.com/register/3042676758300304988 About the Program: Many people living with ALS struggle to understand whether it is OK to exercise, what kind of exercise is most beneficial, and whether exercise slows disease progression. Please join as, Hannah Redd PT, DPT, NCS, at […]
The Latest News from Massachusetts General Hospital with Dr. Suma Babu, from the MGH Healey Center for ALS Sunday, April 30, 1:00 - 2:00 p.m. ET Join us for an informative talk by Dr. Suma Babu, sharing with us the latest research developments at the Healey Center for ALS, and highlighting some of the important […]
NEALS Webinar: Tofersen Update Tuesday, May 2, 2023 4:00 PM ET The U.S. Food and Drug Administration (FDA) has granted accelerated approval for tofersen for the treatment of individuals with superoxide dismutase 1 (SOD1) amyotrophic lateral sclerosis (ALS). Join Dr. Timothy Miller for a webinar update following the FDA’s recent announcement moderated by NEALS […]
Implications of tofersen for everyone with ALS Tuesday, May 2, 2023 4:45 PM ET The FDA’s recent decision to approve tofersen offers direct benefit to people living with SOD1 ALS, and offers hope to everyone else living with ALS as well. Join the team from The ALS Association to discuss the implications of this […]
Please join us for this year's ALS Clinic Community and Research Day on Saturday, May 6th, 2023 1:00 - 4:00 PM EST. Charlestown Navy Yard 114 16th Street, Building 114, Room D1 A remote zoom option is available, please indicate if you will be joining virtually or in person via the Eventbrite link Join us for […]
About the Program: The practice of genetic testing in ALS has been impacted by high patient demand for testing, sponsored testing programs, and a new drug application to the FDA for the first gene-targeted therapy in ALS. However, many challenges exist, including few genetic counselors in ALS clinics, and issues with laboratory methods and reporting. Jennifer […]
When an emergency strikes, we want you, our first responders, on the scene. But when that emergency involves someone living with ALS, things can be more complicated. The best way to learn about these unique needs is to hear about them from people living with ALS themselves, as well as their caregivers and loved ones. […]
An ALS diagnosis often comes out of nowhere. Most people do not even know what ALS is until they are diagnosed with it. Unfortunately, there are families where ALS is very well understood and an ALS diagnosis is common. People with familial ALS often have several known relatives who have lived and, in most cases, […]
A panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips, considerations, and what can be done at home.
Please join us on Thursday, June 8th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Brandy Quarles, MPH, to […]
Please join us on Thursday, June 8th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Brandy Quarles, MPH, to […]
When someone is diagnosed with ALS, it can devastate a family. Imagine multiple family members being diagnosed within your lifetime. And knowing that other living family members and future generations might be at risk. Imagine growing up with the specter of ALS chasing you. Being ever-present. Your family tree becomes suspect. Who had it? Who […]
Date/Time: Monday, June 19, 2023, at 12:00 p.m. CST Registration Link: https://attendee.gotowebinar.com/register/4658833508087010396 About the Program: Not everyone with ALS will need or choose to have a tracheostomy, but there may come a time when it’s necessary for continued breathing. You may have respiratory weakness that can no longer be treated with a mask and non-invasive ventilation. […]
A mid-year update from the Scientific Advisory Council.
Presenters: Dr. Jinsy Andrews (Columbia University), Dr. Christina Fournier (Emory University), Dr. Eric Macklin (Mass General Hospital) What do researchers and scientists mean when they describe a study as “statistically significant?” How do people with ALS and clinicians understand whether or not a treatment option is “clinically significant?” Join us for a webinar and panel […]
Please join us on Thursday, June 22nd at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD will present updates on the Platform Trial and answer questions from the audience. We will be joined by Dr. Shafeeq Ladha of Barrow […]
Weekly Q&A with guest speaker Hilda Gutierrez, MD of Beth Israel Deaconess Medical Center
Weekly Q&A with guest speaker Bill Cho, MD, PhD of Calico Life Sciences (Regimen F)
Weekly Q&A with guest speaker Sarah Heintzman APRN-CNP from Ohio State Universit
A Manual of Instructions: Maps for a Few Dark Places featuring Dr. Scott Eberle with an introduction by CCALS Founder, Ron Hoffman Sunday, July 16, 2023 1:00 - 2:00 p.m. ET It’s not often in life that you get a few maps for how to traverse the dark places of a serious illness. Scott Eberle, MD, […]
Join us for our July ALS Learning Series with Dr. Senda Ajroud-Driss, neurologist and director of the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine. She’ll discuss updates in ALS clinical research, provide information on trials that are currently recruiting, and review inclusion criteria, with a Q & A to […]
Regimen G Drug Science Q&A Webinar with Denali Therapeutics
NINDS Fundamental Neuroscience Working Group Public Webinar July 27, 2023 | 12:00 - 1:00 PM ET Please click this link to register for the webinar What is the Fundamental Neuroscience Working Group? Find out more here: NANDSC Fundamental Neuroscience Working Group FNWG Public Webinar Agenda (tentative) Introductory Remarks (Walter Koroshetz, 5 min) Committee Charge (Lyn Jakeman, […]
Please join us on Thursday, July 27th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Dr. Suma Babu of Mass General Hospital to […]
Join me, Kristine Copley, our founder, Ron Hoffman, and tech genius Tom Meadows in a groundbreaking presentation about hidden and undocumented functionality in the Apple OS that can specifically benefit people with ALS. Tom’s childhood friend, Steve, was diagnosed with ALS in 2021. Steve's disease progressed and using his phone became more and more difficult. […]
Learn How ALS TDI is Partnering with Unite Genomics to Expand the ARC Study Led by ALS TDI and Unite Genomics Wednesday, August 9, 2023 | 3:00 - 4:00pm EDT The ALS Research Collaborative (ARC) has been gathering over eight years of comprehensive data from people with ALS, however, the untapped potential of participants' electronic […]
Please join us on Thursday, August 17th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by ALS advocate Gwen […]
About the Program: In this Learning Series webinar, Professor Samar Aoun will share key findings and advice on enabling social networks to support people living with ALS/MND, making palliative care more widely accessible. A particular focus will be on bereavement support and family caregiver support. The Les Turner ALS Foundation is proud to offer this […]
Why do some asymptomatic individuals consider ALS genetic testing? Why do some symptomatic individuals consider it? The decision is a personal one, and there are professionals to help us through the process: ALS neurologists and ALS genetic counselors. It can also be helpful to hear from individuals who have reached their own decisions. Join the […]
Please join us on Thursday, August 24th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Dr. Robert Bowser […]
The International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised and the topics that require further attention, and how these compared to our 2021 survey.
Thursday, September 14, 2023, 12:00 p.m - 1:00 p.m CST Join us for our September ALS Learning series with Dr. Edward Kasarskis where he’ll discuss nutrition and hydration, constipation, and bowel management in ALS. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to […]
Please join us on Thursday, September 14th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by Jennifer DiMartino from ALS […]
Join Dr. Nadia Sethi, the Director of Community Outreach and Engagement at the ALS Therapy Development Institute (ALS TDI), for this new virtual discussion series. These conversations will provide an overview of research at ALS TDI, discuss current clinical trials, and provide space to converse and ask questions about ALS science and research. Through this series, […]
Please join us on Thursday, September 21st at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by guest speaker Amanda Lee, […]
Meet Your ALS Orgs Presentations from Hope Loves Company, MAC Angels, and Roon Tuesday, September 26, 2023 | 3:00 - 4:00pm EDT You are invited to attend our fourth event in the Town Hall series “Meet Your ALS Orgs”. The next event in the series will be held on September 26th at 3 p.m. ET […]
We will discuss warning signs, how to safeguard, get help, and maintain mental health in people living with ALS/MND and caregivers.
Please join us on Thursday, September 28th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, Dr. Paganoni will also present updates on the EAP […]
“Writing is a form of therapy. Sometimes I wonder how all those who do not write, compose, or paint can manage to escape the madness, melancholia, the panic and fear which is inherent in a human situation.” -Graham Greene I AM ALS’ Write Stuff team requests your presence at their first Literary Salon, held on […]
We invite you to join us and other people with ALS and families to engage in a positive setting of collaboration and community. We are excited to host EverythingALS Community Event: Non- Invasive Treatment of ALS Using Motor Neuron Hyperexcitability Suppression - Nader Yaghoubi MD , PhD Wednesday, October 4th, 4:00 PM Pacific Standard Time […]
presented by Wendy Dainin Lau, MD Sunday, October 15, 2023 1:00-2:00 p.m. ET Join us for an inspirational talk with the author of the new book, “Inner Practice of Medicine.” In her talk, Wendy will share with us her transition from being an emergency room doctor who had lost her way, to finding the path […]
Dear MGH-ALS Community, Darlene Sawicki and Sarah Luppino, Nurse Practitioners at the MGH ALS Multidisciplinary Clinic, will share what they learned at the NEALS 2023 conference with the ALS community. Please join us for this webinar on Wednesday, October 25th at 2 pm ET. Best, Your ALS Team at the Healey & AMG Center at Mass […]
Title: Ethical Principles & Informed Consent in Research Date/Time: Thursday, October 26th, 2023 at noon CST Discover the crucial role of informed consent in research at our October ALS Learning Series. Emma Schmidt, Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine, will unravel the history of informed consent, guide you […]
Heading into the new year, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, November 9th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs with our guest host, Dr. Suma Babu of Massachusetts General […]
Special Topic: Regimen G Drug Science Curious about the science behind Regimen G of the HEALEY ALS Platform Trial? Join us for our weekly webinar on Thursday, November 16th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) where scientists from Denali Therapeutics will provide an overview about DNL343 and answer your questions. Dr. Sabrina Paganoni of […]
This is a reminder of our upcoming webinars related to RFA-NS-24-029 "Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)”. NIH program and review staff will provide an overview of the RFA, including objectives, application instructions and review criteria and will be available to answer questions. Topic: Technical Assistance Webinar: RFA-NS-24-029 - Amyotrophic Lateral […]
Heading into the new year, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, December 14th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs with our guest host, Dr. James Berry of Massachusetts General […]
Sunday, December 17, 2023 1:00-2:00 p.m. ET Doctor Goodson will discuss his pathway to medicine and the doctor's side of the doctor patient relationship. He will describe his 25 years as a health care advocate. Finally, he will discuss the transition from doctor to ALS patient and consider the various perspectives for all those involved […]
This is a reminder of our upcoming webinars related to RFA-NS-24-029 "Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required)”. NIH program and review staff will provide an overview of the RFA, including objectives, application instructions and review criteria and will be available to answer questions. Topic: Technical Assistance Webinar: RFA-NS-24-029 - Amyotrophic Lateral […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support. Wednesday, January 10th, 4:00 PM Pacific Standard […]
As part of our weekly webinar series, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, January 11th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs with guest host, Dr. Amy Tsou, […]
Pridopidine update with Prilenia Therapeutics
This webinar will provide information on ALS/MND treatments currently in Phase 3 Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed.
ALS Patient Fellows Share Insights from the ALS MND Symposium ALS Patient Fellows Share Insights from the ALS MND Symposium Thursday, January 25, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming Town Hall on January 25th to hear from community members who attended the International Symposium on ALS/MND this past December. This event will […]
The National ALS Registry is a multi-faceted research platform. Launched in 2010, the Registry evaluates the public health burden of ALS by determining who has ALS in the United States as well as investigating the causes and risk factors for this disease. The Registry also connects persons with ALS with clinical trials and epidemiological studies, […]
Please join us on Thursday, January 25th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week we will be joined by representatives from […]
About the event Around 140,000 or more healthy people in the United States have C9orf72 repeat expansions, a few thousand more with a current ALS or FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to […]
About the Presentation: Navigating ALS care can be complicated and filled with many complex decisions, including whether genetic testing is right for you. Join us for a discussion with genetic counselor Laynie Dratch, ScM CGC, as she describes the role of a genetic counselor and addresses common questions about the genetics of ALS-FTD spectrum disorders, the genetic testing process, […]
About the event Up to 50,000 healthy people in the United States have pathogenic GRN variants, and about one thousand more have an active FTD diagnosis - what research is available for them to participate in? It can be hard to understand what research participation is available. It can be even harder to picture what […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
As part of our weekly webinar series, we will be dedicating the second Thursday of each month to a discussion about Expanded Access and EAPs. Please join us on Thursday, February 8th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session about EAPs. This week, we will be joined […]
Tuesday, February 13, 2024 4:00 - 5:00 PM ET Please join us for a conversation with Dr. Christine Vande Velde (Robert Packard Center for ALS Research), Erin Fleming (Project ALS), and Dr. Fernando Vieira (ALS Therapy Development Institute) as we explore the role of the ALS community in shaping pre-clinical research, and the transformative impact […]
Speaker Series: A Comprehensive & Integrative Medicine Approach to ALS Sunday, Feb. 18, 2024, 1:00 - 2:00 pm ET Presented by Shelena C. Lalji, M.D., F.A.C.O.G. Functional Medicine Physician, ALS Advocate, Author, Speaker, Devoted Mother, and Caregiver to Husband with ALS Introduction by Ron Hoffman, CCALS Founder Join us for an informative and inspirational […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
Thursday, February 22nd, 5:00 pm EST: Genetics Discussion with Dr. Mark Garret (Mass General Hospital) Mark Garret, MD Dr. Garret is a neurologist and researcher at the Sean M. Healey & AMG Center for ALS at MGH. Dr. Garret is particularly interested in familial ALS, and he has been involved in multiple clinical trials evaluating targeted […]
Unveiling the ALS Trial Navigator - Empowering Your Trial Search Watch a live demo of this innovative platform and get your questions answered! Tuesday, February 27, 2024 | 3:00 - 4:00pm EDT Join us for an exciting Town Hall unveiling the innovative ALS Trial Navigator – a comprehensive resource designed to empower individuals and caregivers in […]
Dr. Ikjae Lee, from the Eleanor and Lou Gehrig ALS Center at Columbia University, will present a summary of literature on the intake of various macronutrients and their impact on the progression of ALS. Building on this foundation, Dr. Lee will introduce recent findings that suggest a diet with a high glycemic index may be […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
"ALS Treatments: Riluzole, Radicava, and Relyvrio" Presented by the NEALS Information and Community Education (NICE) Working Group Monday, March 18, 2024 at 4:30pm ET Moderated by Senda Ajroud-Driss, this webinar for both clinicians and people living with ALS will review the 3 drugs that are currently FDA-approved in the United States for the general ALS population. Panelists, […]
Join the call early! The speaker will start promptly at 4:00 PM PST. The meeting room will be open at 3:30 PM PST. Questions for our Speakers? If you have questions you want to ask during the call, please email info@everythingals.org
Please join us on Thursday, March 21st, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Merit Cudkowicz, MD, MSc, and Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial and answer questions from the audience. This week, we will be joined by guest speaker Karen Parada, […]
March 27, 2024 8:00 AM Eastern Time (US and Canada) This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY, MAGNET and SMART. They will update us on their approach, recruitment, trial eligibility and their latest news. Moderator: Dr. Nicholas Cole – Chair of Scientific Advisory Council Panel: Dr. […]
Thursday, March 28 - 12 - 1 PM CST About the Program: Join us for our March ALS Learning Series, where team members and people living with ALS will explore the crucial role of collaboration in delivering holistic care. Discover how multidisciplinary clinics can help people living with ALS to live longer and with a […]
A new approach to genetic testing for patients and family members at risk of ALS Wednesday, April 3, 2024 | 3:00 - 4:00pm EDT Participate in our upcoming ALS Town Hall on April 3rd to hear how ALS scientists, advocates, innovators, and gene carriers have collaborated to develop the "Light the Way" program. With the […]
About the talk: Advanced directives are legal documents that provide instructions for medical care. When living with ALS, it is important to think ahead about what kind of care you may want in the future. Advanced directives are a way to ensure that you, your family, and your ALS care team are all on the same […]
Discover Roon: Your Ultimate ALS Resource for Answers to All Your Questions: Wednesday, April 17, 2024 | 3:00 - 4:00pm EDT Join us on April 17, 2024 for an ALS Town Hall led by Roon. Through Roon, a completely free app and website, you can find curated short videos answering thousands of the top questions that […]
April 24, 2024 9:00 AM Eastern Time (US and Canada) This webinar will provide tools and recommendations for People living with ALS/MND, their caregivers and youth. We will learn how to take care of our mental health upon diagnosis, how to deal with our emotions like guilt and anxiety. And how to drive motivation and […]
Join us for an insightful session with Dr. Ghazala Hayat, MD, FAAN, FANA, FAANEM, as we delve into the prevalence and challenges of constipation in people living with ALS. Dr. Hayat will discuss how constipation might be connected to autonomic system problems in those with ALS, using new research and survey findings.
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Hoping to live stream on Mike Quigley's YouTube Channel https://www.youtube.com/@RepMikeQuigley
Join Dr. Terry Heiman-Patterson, Dr. Sabrina Paganoni, and Dr. Kelly Gwathmey's discussion of the importance of multidisciplinary care and the role of the ALS Better Care Act to ensure that quality care at Multidisciplinary Centers is maintained and access to care and trials is increased.
What: Clinical Trials 101 When: May 9, 2024 6pm ET Where: Zoom I AM ALS’ Clinical Trial Community team will be hosting a monthly webinar series to increase people’s understanding of clinical trials in general, as well as ongoing ALS clinical trials and trial finder tools. The first webinar will cover the basics of clinical trials. The following […]
Expanded Access 101 - Presented by the Working Group on Compassionate Use & Preapproval Access (CUPA) Date & Time May 15, 2024 12:00 PM Description Our annual introductory webinar covering the basics of the expanded access (compassionate use) pathway of access to investigational medical products
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
National Institutes of Health (NIH) funded “ALL ALS” consortium is a multi-institutional effort that aims to organize the ALS clinical research landscape in the US. ALL ALS is operating in partnership with several stakeholders to operationalize the recommendations of the Accelerating Access to Critical Therapies for ALS Act (ACT for ALS) Public Private Partnership. ALL […]
May 29, 2024 7:00 AM Eastern Time (US and Canada) This webinar will cover the essentials to understand respiratory support in ALS/MND. We will cover how breathing is affected, what care and support can be followed, non-invasive equipment available, and what is a tracheostomy, how it works, and considerations. Presenter: Susan Brumby
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
About the program: People living with ALS must make many complex decisions regarding their future care needs, which can be stressful and overwhelming. In our upcoming ALS Learning Series, with Dr. Anne Hogden, she’ll discuss how she and other researchers have collaborated with the ALS community, their family members, and their ALS care teams to develop tools […]
In this educational webinar, Dr. Richard Bedlack of ALSUntangled will review what he considers to be the most promising alternative and off-label ALS treatments currently. These products, which include vitamins, supplements, and medications approved for other conditions, all have plausible mechanisms and at least one human trial demonstrating a statistically and/or clinically meaningful benefit. Known […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Join us for this inaugural webinar, which marks the beginning of our four-part NEALS Community Education series on advances in respiratory care in ALS. This series, organized by the NEALS Respiratory Care and Ventilation Committee, will focus on respiratory assessment innovations and clinical implementations.
Event description: Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, fatal neurological disease. Individuals affected by ALS include those living with ALS, their caregivers and families, at-risk ALS genetic carriers, and others. Currently no treatments stop or reverse the disease, although various FDA-approved formulations may extend life by several months. Congress called on […]
About the program: What can you do to control your phone or tablet, when tapping on the screen becomes difficult? June's ALS Learning Series will describe in detail how to control your mobile devices totally hands-free with just your voice. After seeing how powerful Voice Control is on iPhones and iPads, and Voice Access is on […]
June 21, 2024 – 10:00 AM Eastern Time (US and Canada) On June 21, Global ALS/MND Awareness Day, we’ll be holding a public webinar, moderated by our Chair, Calaneet Balas, to explore the impact of the Ice Bucket Challenge, and how it raised the profile of the ALS/MND and led to significant advancements in care, […]
Tuesday, June 25th, 2024 4:30 - 5:30 PM ET Genetic counselors Lauren Lichten and Laynie Dratch will describe the genetics of ALS, why genetic counseling and testing may be of value to a family impacted by ALS, and what to expect from the process. They will be joined by genetic counselor Jennifer Roggenbuck and Dr. […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
As part of our community webinar series, we will dedicate one Thursday each month to a discussion about Expanded Access and Expanded Access Protocols (EAPs). Please join us on Thursday, July 11th at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a brief presentation and Q&A session featuring guest speakers from our EAP Patient Advisory Committee.
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
About the Program Join us for our July ALS Learning Series where we will share information about work being done in the areas of inclusion and education in relation to ALS Clinical Research. We will highlight the Northeast ALS Consortium (NEALS) Clinical Research Learning Institute (CRLI) Research Ambassador Program, Community Education Webinars hosted by NEALS, […]
Please join us on Thursday, July 25th, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the HEALEY ALS Platform Trial. Sabrina Paganoni, MD, PhD, will present updates on the Platform Trial, share ways to stay connected to news in ALS research, and answer questions from the audience. This week, we will shine a […]
Wednesday, July 31st, 2024 4:00 - 5:00 PM ET Webinar II of the Respiratory Care in ALS webinar series presented by the NEALS Respiratory Care and Ventilation Committee. Advances in Cough and Secretion Management in ALS, will focus on use of the validated Oral Secretion Scale (OSS) for predicting tolerance of noninvasive ventilation and management of secretions. Indications […]
Share Your Experience and ALS Advance Research – Join the ARC Study Led by Alan Premasiri, Sr. Manager, Clinical Operations at ALS TDI Thursday, August 1, 2024 | 3:00 - 4:00pm EDT Join us for a virtual discussion about the ALS Research Collaborative (ARC) study! This innovative research initiative allows people with ALS to share their unique […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Namita Goyal, MD Dr. Namita Goyal is the director of the UCI Health ALS & Neuromuscular Center. With support from the axeALS Foundation and the Sean M. Healey & AMG Center for ALS at Mass General, Dr. Goyal led efforts to establish an EAP program at UCI Health in September 2023. Amanda Stevens Amanda and […]
Join us for an insightful update on the Himalaya Trial presented by Nazem Atassi and Merit Cudkowicz. During this webinar, Dr. Atassi and Dr. Cudkowicz will present the results of the Phase 2 trial in ALS and answer questions. Don't miss this opportunity to learn about the latest developments in ALS research from leading experts […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Presented by Heather Pillar Author of the new book, Memento Morrie: Images of Love and Loss with an introduction by CCALS Founder, Ron Hoffman Sunday, August 25, 2024 1:00 p.m. ET Join us for an informative and inspirational return to the wit and wisdom of Morrie Schwartz, the subject of Mitch Albom’s international best-seller, Tuesdays with Morrie. […]
Join us for the third webinar in the Respiratory Care in ALS series by the NEALS Ventilation and Respiratory Care Committee. This session will cover the current US guidelines for using non-invasive ventilation (NIV) in ALS, including research and clinical insights for optimizing NIV.
About the Program: Join us for our August ALS Learning Series on advocating for yourself and effectively communicating with your ALS health team, presented by Dr. Ambereen Mehta and Dr. Suzana Makowski, two leading palliative care ALS experts. This session will provide people living with ALS, their families, and care partners with practical strategies to ensure […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Join us for the NEALS NICE Working Group Webinar on "The Role of Biomarkers in ALS" with James Berry, MD, MPH, and Bob Bowser, PhD, both principal investigators from the Access for All in ALS (ALL ALS) Consortium. They will discuss the evolving role of biomarkers in ALS. Biomarkers are biological markers, often genes and […]
Open Enrollment is the time each year when consumers can sign up or make changes to their health insurance coverage. This presentation will outline why you should care about Open Enrollment, factors to consider when enrolling in a new plan, and the importance of choosing your plan wisely, especially for those diagnosed with ALS. We […]
Join us for the NEALS webinar, "Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One." Presenter Molly Spitz, RD, an ALS-focused registered dietitian from Barnes Jewish Hospital in St. Louis, MO, will share essential information and insights about feeding tubes. Don't miss this opportunity to learn and ask questions […]
Join us for the NEALS webinar, "Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One." Presenter Molly Spitz, RD, an ALS-focused registered dietitian from Barnes Jewish Hospital in St. Louis, MO, will share essential information and insights about feeding tubes. Don't miss this opportunity to learn and ask questions […]
Join us to hear Dr. Fernando Vieira, CEO and CSO of the ALS Therapy Development Institute, and Dr. Richard Bedlack, Director of the Duke ALS Clinic, share the latest findings from the IGFBP7 ARC Study. This is a rare opportunity to gain insights into cutting-edge research and have your questions answered by two of the […]
Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen research to make a lasting impact on the future of ALS treatments and support.
Title: Stitching Strength: What I have learned about hope in ALS and how I am trying to weave that into my practice Speaker: Dr. Richard Bedlack Date: Thursday, November 14, 2024, at 10 am CST Link to register: https://us02web.zoom.us/webinar/register/WN_vs8Q-VTUSTGCd0r5XmWiaQ About the Program: Join us for our November ALS Learning Series about hope with Dr. Richard Bedlack. In […]
Join this webinar to explore innovative, multidisciplinary approaches in disease modeling, drug testing, and tissue engineering using advanced in vitro systems. Dr. Francesco Saverio Tedesco will present cutting-edge examples, including the development of advanced muscle models for studying muscular dystrophies and designing more efficient, targeted therapies for neuromuscular diseases. Attendees will also gain insight into […]
Shifting the PARADIGM: PrimeC, an Oral Candidate for ALS, Demonstrates Safety, Efficacy, and Target Engagement Biomarkers in a Phase 2b Trial Don't miss this opportunity to hear first hand from these extraordinary individuals as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research. Together, let's harness the power of citizen […]
Register to hear the personal accounts of life with ALS and treatment with RADICAVA ORS® (edaravone) from 2 people living with ALS. Moderated by an ALS advocate and volunteer, join these panelists as they share their personal advice and perspectives on navigating their journeys with ALS. Brought to you by Mitsubishi Tanabe Pharma America. Stephanie Cantos Stephanie […]
Please join us on Thursday, November 21st, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the ALL ALS Consortium. James Berry, M.D., M.P.H., and Bob Bowser, Ph.D., will present updates about Access for All in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from […]
These webinars aim to inform and answer participant questions on the NINDS Amyotrophic Lateral Sclerosis (ALS) Intermediate Patient Population Expanded Access (U01 Clinical Trial Required) RFA# TBD. The goal of this announcement is to support the conduct of scientific research utilizing data from expanded access (EA) for investigational drugs or biological products for patients living […]
Please join us as we welcome Dr. Marjan Sepassi, Vice President of Medical Affairs at Clene Nanomedicine, for our next Expert Talk webinar. Dr. Sepassi will be discussing CNM-Au8 long-term evidence and providing an EAP Program update.
Advanced methods of machine learning have paved the way for a new generation of medical and clinical research. New methods and data resources can offer better diagnostics, new therapeutics, and disease management. Conditions such as ALS are uniquely suited to benefit from these strategies, but there are important considerations. From the basics of what makes […]
People with ALS can experience emotional distress and mood-related issues such as depression, a decline in quality of life, and feelings of hopelessness and helplessness, known as existential distress. There are few therapies that currently treat these symptoms in a significant or sustained way, and those that do often have unwanted side effects and limited […]
About the Program: Join us for our December Learning Series with Dr. Suzana K.E. Makowski, medical director of Compassionate Care ALS. Dr. Makowski will discuss spirituality and its role in ALS, along with where we can find light in the darkness and gratitude as we enter a new season and new year. The Les Turner ALS […]
Wednesday, January 15th 2025 1:00 PM - 2:00 PM ET In this webinar, Drs. Andrews, Babu and Bedlack will explain what Expanded Access Programs (EAPs) are and how they differ from other pathways by which people living with ALS can access experimental products. They will review what we have learned from recent EAPs, what is […]
Tuesday, January 21, 2025 11:00 AM - 12:00 PM ET Join us for a NEALS webinar featuring an overview of 2024 milestones, key updates, and plans for 2025. Led by NEALS Co-Chairs Dr. Jinsy Andrews and Dr. James Berry, this one-hour session will provide a Year in Review and highlight NEALS’ initiatives. Additionally, Dr. Jeremy […]
Please join us on Thursday, January 23rd, at 5:00 pm EST (4:00 pm CST/2:00 pm PST) for a webinar about the ALL ALS Consortium. Members of the ALL ALS study team will present updates about Access for All in ALS (ALL ALS), share ways to stay connected to news in ALS research, and answer questions from the […]
About the Program: ALS research depends on people living with ALS to join the National ALS Registry. Every individual’s story can contribute to our understanding of the disease, its causes, and how to fight it. Join us for our January ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry […]
About the Program: Every caregiver — and every caregiving journey — is unique, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is at the same time challenging, exhausting, rewarding, and full of unexpected emotions. Linda Levine is a caregiver for her husband David Buseck, a person with ALS. […]
In 2016, a "secret shopper" initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and quantity of responses, highlighting areas needing improvement. This webinar revisits the study in 2024 to evaluate current site responsiveness compared to the 2016 baseline. We […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
“I don’t want to talk about it.” “Not today.” Talking about dying is difficult. It’s a conversation many of us avoid, postpone, or put off—sometimes until it’s too late. But having these conversations with your loved ones can be a valuable gift. We invite you to join a webinar on essential end-of-life planning topics, including wills, […]
Exposomics and epigenetic ALS insights: How exposures alter ALS risk and progression Dr. Goutman will discuss the role of environmental exposures on ALS based on studies conducted through the University of Michigan and the Pranger ALS Clinic at Michigan Medicine.
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions. Platform Trial Learnings with Biostatistician Lori Chibnik Lori Chibnik, PhD, MPH Lori Chibnik is a biostatistician and Assistant Professor with an appointment in the Department of Neurology at Massachusetts General Hospital and the Department of Epidemiology […]
Join us on Thursday, March 6th at 6PM EST for a webinar where youth members of I AM ALS and Lorenzo’s House will come together to share their personal experiences with ALS and young-onset dementia. During this panel, they will discuss how they advocate for greater awareness of these conditions and the impact they have […]
Join us for a NEALS NICE Working Group webinar, on evidence-based respiratory interventions aimed at improving outcomes for individuals with amyotrophic lateral sclerosis (ALS). Dr. Emily Plowman and Dr. Jason Ackrivo will present the latest research and clinical recommendations on respiratory care in ALS. Following their presentations, a panel discussion featuring Dr. James Wymer and […]
In this upcoming Town Hall, ALS TDI and Corsalex will discuss their collaboration to advance the discovery and development of effective treatments for ALS and FTD caused by C9orf72 mutations. This scientific discussion may be of particular interest to industry professionals and academic researchers, but anyone in the community is welcome to attend. Corsalex will also share […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Hope is more than just an idea—it’s a powerful force that shapes resilience, fosters connection, and drives meaningful change. In this inspiring webinar, Dr. Richard Bedlack from Duke will share insights on the importance of hope and how it can be actively woven into daily practice, both personally and professionally. Join us for "Stitching Strength: Things […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
About the Program: In this talk Dr. Berry will discuss the aims, design considerations, and implementation of observational studies, highlighting the many ways observational studies hastened drug development and can create resources that aid the ALS community in the present and for years to come. About the Speaker: Dr. Berry leads the Massachusetts General Hospital […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
This webinar provides a behind-the-scenes look at how ALS/MND specialists are trained to approach difficult conversations and decisions in a compassionate, patient-centered way. While designed specifically for clinicians, this session may be of interest to individuals living with ALS and care partners who want to understand the communication skills and tools used by their healthcare […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Join us on Monday, April 14th at 7pm ET for an important discussion with staff from the ALS clinic at Georgetown University about ALS clinical trial participation. We will explore both challenges and positive experiences from the perspective of people living with ALS (pALS) and their caregivers. Objectives: Understand key challenges faced by pALS and caregivers […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
On Tuesday, April 22nd at 6pm ET members of the IAA community who utilize voice technology will join staff from Bridging Voice for a panel discussion. Participants will discuss their own experiences as well and Bridging Voice will provide insight into the technology options and walk through what the process of getting started entails. If […]
The ALS Exposome: How Environmental Exposures Inform Disease Risk and Prevention Join us for our April ALS Learning Series with Dr. Goutman, a neurologist from the University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence ALS. A Q&A will follow. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS […]
Stay connected to news in ALS research and get answers to your questions about observational research! Join us on Thursday, April 24th, at 5:00 pm EDT (4:00 pm CDT/2:00 pm PDT) for a webinar update about the Access for All in ALS (ALL ALS) Consortium. Guest speaker Dr. Mark Garret, along with Patient Navigator Myah Stone, will […]
Discover the Power of Your EHR Data in ALS Research. Join Dr. Danielle Boyce for a Town Hall to learn how ALS TDI's ARC Study is using electronic health records (EHRs) to drive ALS research breakthroughs. Dr. Boyce will discuss the current landscape of EHR research, revealing how ALS TDI is leveraging these records to advance our research […]
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Don't miss this opportunity to hear directly from leading experts, and ask them your questions, as they share their experiences, insights, and aspirations in the pursuit of advancing ALS research and finding a cure. Together, let's harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments and support. […]
Join us for our May ALS Learning Series with Dr. Kelly Gwathmey from Virginia Commonwealth University. She will explore the causes and consequences of ALS diagnostic delay, along with potential solutions to address this problem. A Q&A will follow. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
Curious about how genetics play a role in ALS when there is no family history? Join us on 5/27 at 5pm EST for a free one-hour webinar led by Ms. Laynie Dratch, a licensed, certified genetic counselor at Penn Medicine. You’ll learn what genetic counseling and testing can (and can't) tell you, why it matters […]
Topic You Deserve to Know: a Conversation on Treatments, Trials, and Truths for the ALS Community Date & Time Selected Sessions: May 28, 2025 06:30 PM Description For ALS Awareness month, Roon is spotlighting key perspectives from ALS non-profit and health technology leaders, field-leading physicians and scientists, and people with lived experience. From updates on […]
Please join us on Thursday, June 5th, at 5:00 pm ET (4:00 pm CT/2:00 pm PT) for a webinar about Healey ALS MyMatch, an innovative early phase, biomarker-driven clinical trial program launched in 2025. Sabrina Paganoni, MD, PhD of Mass General Hospital will be joined by guest speaker Suma Babu, MBBS, MPH to share information about ALS […]
Join us on June 9th, 11:00am ET for a webinar introducing the first Healey ALS MyMatch clinical trial- the ACACIA trial of oral digoxin. Healey ALS MyMatch is a novel, patient-centered, early phase, clinical trial initiative launched by the Healey & AMG Center for ALS at MGH. ALS MyMatch is a series of unique, custom-designed, Phase 1b/2a clinical trials, built using an agile infrastructure and […]
Join us on Select Thursdays at 5:00-5:30pm Eastern Time for updates on trial progress and answers to audience questions.
NEALS Webinar: Medication Administration via Enteral Feeding Tubes: Key Considerations for People Living with ALS Join us for a webinar presented by the NEALS Nutrition Committee! This session is open to everyone—caregivers, people living with ALS, and healthcare professionals alike. The webinar will focus on best practices for medication administration for individuals who require enteral […]
About the Program: Join us for our June ALS Learning Series webinar — a collaboration with the Healey Center Community Webinars. Catherine Small, Patient Navigator for Healey ALS Platform Trial, will provide updates on current research and the Acceleration Centers of Enrollment (ACE) initiative, while Anne Marie Doyle, from the Les Turner ALS Foundation, will discuss […]
Don't miss this free opportunity to learn about this important study and hear directly from Dr. James Berry, Associate Neurologist, Neurology at Massachusetts General Hospital and EverythingALS CEO Indu Navar. Please come with your questions and help us harness the power of citizen-driven research to make a lasting impact on the future of ALS treatments […]
