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BEGIN:VEVENT
DTSTART;TZID=America/New_York:20260316T140000
DTEND;TZID=America/New_York:20260316T153000
DTSTAMP:20260928T190447
CREATED:20260227T150328Z
LAST-MODIFIED:20260227T150909Z
UID:19247-1773669600-1773675000@www.als-mnd.org
SUMMARY:ALS Association Webinar: Exploring ALS Clinical Trials
DESCRIPTION:Exploring ALS Clinical Trials: What They Are\, How to Find Them\, and What Happens Next \nFor many in the ALS community\, clinical trials represent both hope and uncertainty. This educational webinar offers a clear\, supportive overview of what clinical trials are\, how ALS clinical trials work\, how to search for opportunities\, and what happens after you contact a trial site. Featuring a conversation with Dr. Kuldip Dave\, this session will walk through screening\, timelines\, and common questions about enrollment. Designed for people living with ALS and their care partners\, this program aims to increase education\, reduce confusion\, build confidence\, and connect attendees with reliable pathways to learn more. \nSpeaker: Dr. Kuldip Dave\, Senior Vice President of Research\, ALS Association \nRegister Here
URL:https://www.als-mnd.org/event/exploring-als-clinical-trials/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260310T090000
DTEND;TZID=America/Toronto:20260310T100000
DTSTAMP:20260928T190447
CREATED:20260227T151159Z
LAST-MODIFIED:20260227T151357Z
UID:19252-1773133200-1773136800@www.als-mnd.org
SUMMARY:Headline Results from the 2025 ALS/MND Fundamental Rights Survey
DESCRIPTION:Join us for a presentation of the headline findings from the third iteration of the ALS/MND Fundamental Rights Survey. This session will share key data and emerging trends on how fundamental rights are experienced by people living with ALS/MND around the world. We will explore areas of progress\, identify persistent gaps\, and consider what the findings mean for advocacy\, policy\, and system-level change. This webinar offers a snapshot of where we stand and where action is still needed. \nWe thank Biogen and Tanabe Pharma America for their generous support of this project. (Multilingual captions available.) \n\nREGISTER NOW
URL:https://www.als-mnd.org/event/headline-results-2025-survey/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260224T090000
DTEND;TZID=America/Toronto:20260224T100000
DTSTAMP:20260928T190447
CREATED:20251219T183802Z
LAST-MODIFIED:20251219T184022Z
UID:19134-1771923600-1771927200@www.als-mnd.org
SUMMARY:Approved Treatments in ALS/MND
DESCRIPTION:This webinar will feature an open conversation and testimonials about access to approved treatments for ALS/MND around the world. We will explore which therapies are approved in different countries and regions\, and discuss if and how people living with ALS/MND can access these treatments in practice.\n \nREGISTER NOW
URL:https://www.als-mnd.org/event/approved-treatments/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260212T120000
DTEND;TZID=America/Chicago:20260212T130000
DTSTAMP:20260928T190447
CREATED:20260120T183922Z
LAST-MODIFIED:20260120T190825Z
UID:19154-1770897600-1770901200@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: Hospice Care and ALS
DESCRIPTION:Hospice Care and ALS: What It Is\, When to Consider It\, and How It Supports You \nJoin for our February ALS Learning series which will provide an overview of hospice care and how it supports individuals living with ALS and their caregivers. Participants will learn what hospice is\, when it may be appropriate\, and how it can improve comfort\, quality of life\, and emotional well-being. The session will also address common myths about hospice and offer guidance on starting these important conversations. Time will be reserved for questions and discussion.  \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar. \nAbout the Speaker: Katie Lord\, RN\, BSN is a seasoned hospice nurse and educator with a comprehensive background in end-of-life care. Over the course of her nursing career\, Katie has served in a wide range of hospice roles—including case management\, admissions\, on-call response\, inpatient care\, and leadership—gaining a deep\, practical understanding of the care journey from multiple perspectives. In her current role as Education Coordinator for the Illinois Hospice and Palliative Care Organization (ILHPCO)\, Katie develops and delivers educational programs aimed at strengthening the quality and accessibility of hospice care across the state. Known for her thoughtful approach and ability to connect clinical realities with compassionate best practices\, Katie helps healthcare professionals\, care providers\, and stakeholders navigate the complexities of end-of-life care with clarity and confidence. \nRegister Here
URL:https://www.als-mnd.org/event/hospice-care-and-als/
LOCATION:Online
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20260131T120000
DTEND;TZID=America/Chicago:20260131T130000
DTSTAMP:20260928T190447
CREATED:20251212T213609Z
LAST-MODIFIED:20251212T213939Z
UID:19098-1769860800-1769864400@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: Living Fully\, Living Well - How Palliative Care Can Help
DESCRIPTION:Dr. Kara Bischoff will provide an introduction to palliative care and how it can be helpful to people with ALS and their loved ones. Aspects of advance care planning that are important for people with ALS will be discussed. Hospice will also be described and distinguished from palliative care. Finally\, information about how to find palliative care services will be provided. Questions will be solicited and answered. \nAbout the Speaker: Dr. Kara Bischoff is the Associate Division Chief for Outpatient Palliative Care and the Medical Director of the Outpatient Palliative Care Service at University of California\, San Francisco (UCSF). Dr. Bischoff has developed a particular expertise in palliative care for people with amyotrophic lateral sclerosis (ALS). She has published substantially about outpatient palliative for people will illnesses other than cancer and was recognized as an Emerging Leader in Palliative Medicine by the American Association of Hospice and Palliative Medicine. Dr. Bischoff received her medical degree from Harvard Medical School\, followed by a residency and chief residency at UCSF in Internal Medicine\, and a fellowship in Hospice and Palliative Medicine\, also at UCSF. She is a mother\, an outdoor enthusiast\, and a San Francisco Bay Area native. \nRegister Here
URL:https://www.als-mnd.org/event/palliative-care-can-help/
LOCATION:Online
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20260128T160000
DTEND;TZID=America/Toronto:20260128T170000
DTSTAMP:20260928T190447
CREATED:20251219T183746Z
LAST-MODIFIED:20251219T183746Z
UID:19132-1769616000-1769619600@www.als-mnd.org
SUMMARY:Nothing About Us\, Without Us: Highlights from the 2025 Patient Fellows
DESCRIPTION:The 2025 Patient Fellows will share their key learnings and experiences from participating in the 36th International Symposium on ALS/MND. Guided by the theme “Nothing About Us\, Without Us\,” this webinar will explore how engaging in research discussions shaped their perspectives\, deepened their understanding of ALS/MND science\, and reinforced the importance of including the voices of those living with ALS/MND in research conversations worldwide. (Captions will be available in multiple languages.) \nREGISTER NOW
URL:https://www.als-mnd.org/event/nothing-about-us-without-us-highlights-from-the-2025-patient-fellows/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251211T120000
DTEND;TZID=America/Chicago:20251211T130000
DTSTAMP:20260928T190447
CREATED:20251124T200652Z
LAST-MODIFIED:20251212T214003Z
UID:19069-1765454400-1765458000@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: The Cost of ALS - Where Research Stands and How it Compares to Other Diseases
DESCRIPTION:In this presentation\, Dr. Grouls will explore a concept people living with ALS know all too well: the financial burden of disease. She will trace the evolution of financial burden research in ALS\, drawing comparisons with the more established field of financial toxicity research in oncology. She’ll share what we’re learning from the latest research and what’s currently being studied—and just as importantly\, she’ll point out where we still need answers. \nAbout the Speaker: Astrid Grouls\, MD is a palliative care physician and clinical researcher at the Baylor College of Medicine in Houston\, TX. She obtained her medical degree and completed her internal medicine training at McGovern Medical School in Houston before completing a palliative care fellowship at MD Anderson. She began at Baylor College of Medicine in 2020\, and works on the inpatient palliative care service and in the ALS Multidisciplinary Clinic. Her clinical research focuses on improving quality of life for people living with ALS and spans advance care planning\, fatigue and financial burden. \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar. \nRegister Here
URL:https://www.als-mnd.org/event/cost-of-als/
LOCATION:Online
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251201
DTEND;VALUE=DATE:20251203
DTSTAMP:20260928T190447
CREATED:20250416T175856Z
LAST-MODIFIED:20250416T175856Z
UID:18437-1764547200-1764719999@www.als-mnd.org
SUMMARY:Allied Professionals Forum
DESCRIPTION:Are you ready to be part of something bigger? The Allied Professionals Forum (APF) brings together healthcare professionals from around the world\, including physiotherapists\, respiratory therapists\, nutritionists\, speech-language pathologists\, social workers and others working in the field of ALS/MND. With over 400 delegates attending from more than 40 countries\, this is your chance to engage in a truly global conversation on the challenges and advancements in ALS/MND care.  \nInfo and registration
URL:https://www.als-mnd.org/event/allied-professionals-forum-2/
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251129
DTEND;VALUE=DATE:20251201
DTSTAMP:20260928T190447
CREATED:20250416T175652Z
LAST-MODIFIED:20250416T175652Z
UID:18435-1764374400-1764547199@www.als-mnd.org
SUMMARY:Alliance Meeting
DESCRIPTION:The Alliance Meeting is the place where member associations can meet and share experiences in growing\, running and building an ALS/MND association to support people living with ALS/MND. The meeting is attended by 200+ delegates from over 40 countries around the globe\, either in-person or virtually\, that represent the Alliance’s many member associations. (Open to Alliance members only) \nInfo and registration
URL:https://www.als-mnd.org/event/alliance-meeting-2/
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251120T130000
DTEND;TZID=Europe/London:20251120T140000
DTSTAMP:20260928T190447
CREATED:20251107T034840Z
LAST-MODIFIED:20251124T200712Z
UID:19042-1763643600-1763647200@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: Managing the Burden of Constipation in People Living with ALS
DESCRIPTION:*This webinar was rescheduled from September. \nJoin us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in this population\, examine the role of dietary fiber\, and discuss how hydration supports bowel health. The session will provide practical strategies to support digestive wellness in ALS care. \nPresenters: Brittany Hitson & Dominique Kosk \nDate/time:  Thursday\, Nov 20th\, at 1 PM EST \nRegister Here
URL:https://www.als-mnd.org/event/better-bowel-days-managing-the-burden-of-constipation-in-people-living-with-als-this-was-rescheduled-from-september/
LOCATION:Online
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251113T130000
DTEND;TZID=America/Toronto:20251113T140000
DTSTAMP:20260928T190447
CREATED:20251107T034529Z
LAST-MODIFIED:20251124T200453Z
UID:19040-1763038800-1763042400@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: Mission Driven Care - How the VA is Transforming ALS Care
DESCRIPTION:Military Veterans are at increased risk of developing ALS. In 2008\, the VA extended benefits to all Veterans with ALS who served greater than 90 days of active duty. Dr. Howard will discuss the unique steps the VA has taken to care for Veterans with ALS\, and why the National Academies called the VA “A bright spot in the landscape of ALS care” in 2024. \nPresenter: Dr. Ileana Howard \nDate/time:   Thursday\, Nov 13th\, at 1 PM EST \nRegister here.
URL:https://www.als-mnd.org/event/mission-driven-care-how-the-va-is-transforming-als-care/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251105T080000
DTEND;TZID=America/New_York:20251105T093000
DTSTAMP:20260928T190447
CREATED:20250830T013254Z
LAST-MODIFIED:20250830T013442Z
UID:18865-1762329600-1762335000@www.als-mnd.org
SUMMARY:Webinar: Annual Clinical Trials Update
DESCRIPTION:In this webinar\, we will share the latest information on ALS/MND treatments currently in Phase 3 clinical trials. We will look at trial timelines\, site locations\, additional programs available\, and key contacts for further information.\n \nModerators: Dr. Nadia Sethi & Dr. Martina de Majo\n \nCaptions in multiple languages available.
URL:https://www.als-mnd.org/event/annual-clinical-trials-update-2/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20251030T120000
DTEND;TZID=America/Chicago:20251030T130000
DTSTAMP:20260928T190447
CREATED:20251006T024539Z
LAST-MODIFIED:20251124T200326Z
UID:18969-1761825600-1761829200@www.als-mnd.org
SUMMARY:Les Turner ALS Foundation Webinar: Functional Mobility Changes with ALS
DESCRIPTION:About the program: Changes in functional mobility are common with ALS. This often may present as difficulty with transfers\, need for a walking aide\, possible wheelchair evaluation\, and need for additional training with a caregiver. In this presentation\, we will cover common mobility changes along with a discussion on what to expect when partnering with an ALS provider and when you should consider scheduling with your ALS provider. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation and Mitsubishi Tanabe Pharma America for sponsoring this webinar.  \nAbout the speaker: Hannah Redd PT\, DPT\, NCS specializes in providing patient care in the area of neuromuscular disorders at the outpatient neurologic clinic at Shirley Ryan AbilityLab. Hannah is currently an adjunct faculty member with the Northwestern University Department of Physical Therapy and Human Movement Sciences and has previously been on faculty at Byrdine F. Lewis College of Nursing and Health Professions at Georgia State University and Emory University School of Medicine.   \nRegister Here
URL:https://www.als-mnd.org/event/functional-mobility-changes-with-als-what-to-expect-and-how-to-partner-with-your-healthcare-team/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20251017T100000
DTEND;TZID=America/Toronto:20251017T160000
DTSTAMP:20260928T190447
CREATED:20250604T133432Z
LAST-MODIFIED:20250604T133432Z
UID:18666-1760695200-1760716800@www.als-mnd.org
SUMMARY:ALS TDI Summit
DESCRIPTION:On Friday\, October 17\, 2025\, from 10:00 – 4:00 p.m. ET\, join the ALS community and ALS TDI for the ALS TDI Summit. The ALS TDI Summit is a free conference that aims to inform and empower the ALS community by educating attendees about ALS TDI’s latest work to discover and develop effective treatments for ALS. The Summit invites all members of the community to learn about ALS TDI’s cutting-edge approach to ending ALS. \nRegister to attend the 2025 ALS TDI Summit virtually or in person: https://fundraise.als.net/alssummit/
URL:https://www.als-mnd.org/event/als-tdi-summit/
LOCATION:Boston Sheraton Hotel\, 39 Dalton St\, Boston\, MA\, United States
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20251015T110000
DTEND;TZID=America/New_York:20251015T123000
DTSTAMP:20260928T190447
CREATED:20250830T013040Z
LAST-MODIFIED:20250830T013414Z
UID:18863-1760526000-1760531400@www.als-mnd.org
SUMMARY:Webinar: Bringing Voices for Life Across Borders
DESCRIPTION:This webinar will take participants through an end-to-end demonstration of creating and using AI voice tools\, highlighting the process from start to finish. The session will feature walkthroughs that illustrate how technology can be applied in different global contexts\, complemented by testimonials to ground the experience in real-world impact.\n \nWe will showcase examples from different regions demonstrating both the universality and regional adaptability of the process.\n \nCaptions in multiple languages available.\n 
URL:https://www.als-mnd.org/event/bringing-voices-for-life-across-borders/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251009T170000
DTEND;TZID=Europe/London:20251009T180000
DTSTAMP:20260928T190447
CREATED:20250822T164429Z
LAST-MODIFIED:20250822T164429Z
UID:18826-1760029200-1760032800@www.als-mnd.org
SUMMARY:Webinar from EUpALS: Looking After Your Own Mental Wellbeing as an ALS Community Leader
DESCRIPTION:Webinar 2: ‘Looking after your own mental wellbeing as an ALS community leader’\nDate: October 9\nTime: 5:00 PM CEST \nThis session focuses inward – on you and your team – offering space to reflect on the emotional demands of leadership and strategies to protect wellbeing\, prevent your own burnout and compassion fatigue\, and how to create a mentally healthy work environment in your organization. \nThis is the second of 2 interactive webinars\, which will focus on the rewards\, challenges and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-looking-after-your-own-mental-wellbeing-as-an-als-community-leader-2/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251002T170000
DTEND;TZID=Europe/London:20251002T180000
DTSTAMP:20260928T190447
CREATED:20250822T164253Z
LAST-MODIFIED:20250822T164417Z
UID:18822-1759424400-1759428000@www.als-mnd.org
SUMMARY:Webinar from EUpALS: Supporting Your Community’s Mental Wellbeing
DESCRIPTION:Webinar 1: ‘Supporting your community’s mental wellbeing’\nDate: October 2\nTime: 5:00 PM CEST \nThis session will explore how to strengthen the mental and emotional support you offer to the ALS community\, with practical guidance on understanding the different types and levels of support\, making the most of what’s available\, dealing with difficult situations\, and sensitive sign-posting. \nThis is the first of 2 interactive webinars\, which will focus on the rewards\, challenges and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-supporting-your-communitys-mental-wellbeing-2/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250925T120000
DTEND;TZID=America/Los_Angeles:20250925T120000
DTSTAMP:20260928T190447
CREATED:20250830T012402Z
LAST-MODIFIED:20250830T012402Z
UID:18859-1758801600-1758801600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Better Bowel Days - Managing the Burden of Constipation in People living with ALS
DESCRIPTION:About the Program\nJoin us for an informative session focused on constipation management in people living with ALS. This webinar will explore the impact of constipation in this population\, examine the role of dietary fiber\, and discuss how hydration supports bowel health. The session will provide practical strategies to support digestive wellness in ALS care.  \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar \nAbout the Speakers\nBrittany M. Hitson\, MS\, RD\, CSG\, LDN: Brittany is an Alabama native who moved to Chicago in 2018. She received her Bachelor of Science in Nutrition-Dietetics with a minor in Business in 2016 from Auburn University. She went on to obtain her Master of Science in Clinical Nutrition from the University of Alabama at Birmingham in 2017\, where she also completed her dietetic internship. In 2023\, Brittany obtained a Board Certification as a Specialist in Gerontological Nutrition from the Commission on Dietetic Registration (CDR).  She is currently practicing as an Advanced Dietitian at Northwestern Memorial Hospital in downtown Chicago and splits her time between providing support to medical-surgical services and motor neuron disease as well as the Lois Insolia Clinic at the Les Turner ALS Center at Northwestern Medicine. She has been a part of the ALS Clinic Team since 2020 and assists in coordinating inpatient ALS G-tube admissions.  \nDominique Kosk\, MPH\, RD\, LDN\, CNSC: Dominique was born and raised in the northwest suburbs of Chicago. She earned a Bachelor of Science in Nutrition and Dietetics from Dominican University and completed her dietetic internship at the University of Michigan Hospitals and Health Centers. She received a Master of Public Health with a concentration in Epidemiology at Loyola University Chicago. Dominique is currently practicing as an Advanced Dietitian in the medical intensive care unit at Northwestern Memorial Hospital and continues to maintain her certification in nutrition support. Dominique is also a dedicated member of the multidisciplinary team in the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine providing nutrition care and managing enteral nutrition regimens for people living with ALS since 2016. 
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-better-bowel-days-managing-the-burden-of-constipation-in-people-living-with-als/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Australia/Melbourne:20250908T163000
DTEND;TZID=Australia/Melbourne:20250908T180000
DTSTAMP:20260928T190447
CREATED:20250825T115045Z
LAST-MODIFIED:20250825T120004Z
UID:18844-1757349000-1757354400@www.als-mnd.org
SUMMARY:INARC Roundtable Discussion During PACTALS
DESCRIPTION:2025 PACTALS INARC Session \nDate: Sept. 8 2025\nTime: 4:30 PM – 6:00 PM\nLocation: Melbourne\, Australia\nFormat: Roundtable Discussion \nFor whom? \nINARC is a network dedicated to ALS clinical trial and care staff (who are not MDs): nurses\, research nurses\, trial coordinators\, social workers\, nutritionists\, speech and language pathologists\, occupational therapists\, physiotherapists\, psychologists\, spiritual care workers. \nThis event allows you to meet and network with new colleagues from other ALS centres or countries. \nSession Theme: \nWhat keeps you up at night? An open conversation about everyday challenges we face and the moments that keep us going in ALS/MND care and research. \nAgenda Overview \n4:30 – 4:45 Welcome and Opening Framing\n4:45 – 5:00 Brief introduction\n5:00 – 5:40 Group Discussion\n5:40 – 6:00 Wrap up \nWant to attend our Roundtable Discussion? \nEmail: inarc@tricals.org or visit the website at tricals.org/inarc-pactals-25.
URL:https://www.als-mnd.org/event/inarc-roundtable-discussion-during-pactals/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Los_Angeles:20250908T120000
DTEND;TZID=America/Los_Angeles:20250908T120000
DTSTAMP:20260928T190447
CREATED:20250830T012337Z
LAST-MODIFIED:20250830T012337Z
UID:18857-1757332800-1757332800@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Participation in the National ALS Registry
DESCRIPTION:About the Program\nALS 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 ALS Learning series with Reshma Punjani and Janie Gobeli to learn how the National ALS Registry helps advance research. Reshma will discuss how to join the National ALS Registry\, what information they collect and why\, and the type of research the registry is conducting\, while Janie will discuss her personal experience with the registry. A Q&A session will follow the discussion. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar.  \nAbout the Speakers\nJanie Gobeli serves as an advisory committee member for the HEALEY ALS Platform Trial and the QurAlis/CISCRP Global Patient Advisory Board\, an ALS Research Ambassador for the Northeast ALS Consortium (NEALS)\, and a member of the Les Turner ALS Foundation’s Support Services Committee. She was diagnosed with ALS in 2021. As a former elementary education teacher and licensed cosmetologist\, she is proud to work as an ALS educator\, advisor\, and speaker because it allows her to be a voice for all ALS warriors and follow her lifelong passion for learning and educating others.   \nReshma Punjani\, MPH is a Health Scientist Epidemiologist with the CDC/ATSDR’s National ALS Registry. She graduated with her Master of Public Health Degree in Epidemiology in 2016 and has been with the National ALS Registry for the past eight years. Reshma has contributed to multiple ALS research publications including prevalence\, incidence\, and ALS cohort analyses\, and geospatial ALS studies. 
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-participation-in-the-national-als-registry/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250907
DTEND;VALUE=DATE:20250910
DTSTAMP:20260928T190447
CREATED:20250225T140413Z
LAST-MODIFIED:20250225T140413Z
UID:18289-1757203200-1757462399@www.als-mnd.org
SUMMARY:PACTALS 2025 Conference
DESCRIPTION:On behalf of the organising committee\, it is with great pleasure that we invite you to join us at the PACTALS 2025 Conference\, taking place from 7th to 9th September 2025 in the vibrant city of Melbourne\, Australia. Under the theme “Towards Precision in ALS/MND Treatments\,” this conference promises to be a pivotal event in the field of ALS/MND research and treatment. \nPACTALS 2025 will bring together leading experts\, researchers\, clinicians\, and advocates from across the globe\, all driven by a shared commitment to advancing our understanding of ALS/MND and improving the lives of those affected by these conditions. The conference will feature the latest research\, innovative therapeutic approaches\, and inspiring discussions aimed at pushing the boundaries of precision medicine in ALS/MND treatment. \nMelbourne\, renowned as a dynamic multicultural society\, provides the perfect backdrop for this gathering. We are confident that the scientific program\, coupled with the unique networking opportunities and international collaborative spirit\, will make PACTALS 2025 an unforgettable and enriching experience. for all.  \nWe warmly encourage you to join us in Melbourne for this landmark event. Together\, we can advance the future of ALS/MND care and create meaningful progress in the journey towards precision treatments. Visit pactalscongress.com for registration and abstract submission. For more details\, you may drop us an email at secretariat@pactalscongress.com.
URL:https://www.als-mnd.org/event/pactals-2025-conference/
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Halifax:20250821T130000
DTEND;TZID=America/Halifax:20250821T140000
DTSTAMP:20260928T190447
CREATED:20250807T130851Z
LAST-MODIFIED:20250807T130851Z
UID:18809-1755781200-1755784800@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Occupational Therapy Solutions for People Living with ALS
DESCRIPTION:About the Program: Join us for an informative session about how occupational therapy can support your daily activities and quality of life while living with ALS. Becca Schroeder\, MOT\, OTR/L\, will explore practical strategies\, adaptive equipment\, and energy conservation techniques that can help you maintain independence in your home and community utilizing her skills as an occupational therapist paired with the expertise of people living with ALS. This webinar will provide you with actionable tools and resources to navigate daily challenges with confidence. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar.   \nAbout the Speaker: Becca has been an Occupational Therapist at Northwestern Memorial Hospital since 2018 where she works with a wide variety of patients with different backgrounds and diagnosis. In 2019\, she began working at the Lois Insolia Clinic at the Les Turner ALS Center at Northwestern Medicine. Here she provides consultative services for those living with ALS and Muscular Dystrophy. Becca enjoys problem solving with her clients to discover ways to make completing everyday living activities more manageable.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-occupational-therapy-solutions-for-people-living-with-als/
LOCATION:Online
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250729T130000
DTEND;TZID=America/Toronto:20250729T140000
DTSTAMP:20260928T190447
CREATED:20250723T183046Z
LAST-MODIFIED:20250724T160756Z
UID:18800-1753794000-1753797600@www.als-mnd.org
SUMMARY:End-of-Life Autonomy – A Conversation on ALS and Medical Aid in Dying
DESCRIPTION:Join us for a thoughtful and informative conversation with Dr. Robin Plumer and Jeremy Boal as we explore the topic of Medical Aid in Dying (MAID). Dr. Plumer will explain what MAID is\, how individuals make the decision to pursue it\, and the compassionate\, patient-centered environments in which it is provided. \nThis webinar will also address the broader context of end-of-life autonomy and the unique considerations for those living with ALS. \nThe session is free and open to all\, and we welcome anyone who may benefit from this conversation. \nZOOM Register Here: https://us06web.zoom.us/webinar/register/WN_cGw2JrVXSbC7bWLXSd0Ifg#/registration
URL:https://www.als-mnd.org/event/end-of-life-autonomy-a-conversation-on-als-and-medical-aid-in-dying/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250724T130000
DTEND;TZID=America/Toronto:20250724T140000
DTSTAMP:20260928T190447
CREATED:20250630T185116Z
LAST-MODIFIED:20250630T185116Z
UID:18783-1753362000-1753365600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Voice Preservation Beyond Recording: Creating and Using My Preserved Voice
DESCRIPTION:About the Program  \nJoin us for a comprehensive review of current best practices and tools in Message Banking\, Voice Banking\, and Voice Cloning\, including the role of Artificial Intelligence (AI) in voice preservation. After a diagnosis of a progressive condition that impacts speech\, an urgent priority is preserving one’s voice. However\, recording your voice is only the first step. Part of the feature matching process is to determine compatibility and integration of one’s preserved voice into communication apps and software. We will cover the full process from recording through integration\, updates on current technologies\, including AI’s role in voice preservation\, and treatment recommendations for using one’s preserved voice most effectively and efficiently for functional communication. \nAbout the Speaker \nLane Rials is a Speech-Language Pathologist with a passion for Augmentative and Alternative Communication (AAC) and helping others. I’ve been privileged to work closely with many people living with ALS and their caregivers/families as a speech pathologist\, regional AAC consultant\, and now as an AAC Specialist with the team at Bridging Voice. The Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-voice-preservation-beyond-recording-creating-and-using-my-preserved-voice/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250710T150000
DTEND;TZID=America/Toronto:20250710T160000
DTSTAMP:20260928T190447
CREATED:20250604T132656Z
LAST-MODIFIED:20250604T132823Z
UID:18660-1752159600-1752163200@www.als-mnd.org
SUMMARY:ALS Town Hall from ALS TDI and Her ALS Story: How Can We Improve ALS Diagnosis?
DESCRIPTION:Join ALS TDI and Her ALS Story (HAS) for the third and final installment of our 3-part collaborative Town Hall series\, “Your Story. Our Science.” \nOur series concludes with How Can We Improve the Diagnosis Process?\, where we will discuss the personal challenges of receiving an ALS diagnosis and the ongoing efforts to make the process faster and more efficient. Hear directly from HAS members as they share their personal diagnosis stories\, including their initial symptoms\, the journey of seeking a diagnosis\, and the timeline they experienced until receiving confirmation. \nFollowing these stories\, we will run throughthe current ALS diagnosis process and highlight its existing challenges. Researchers from ALS TDI will describe ongoing initiatives and research efforts aimed at improving and accelerating the ALS diagnosis process\, ultimately striving for earlier and more accurate diagnoses for individuals and families affected by ALS. \nRegister now.
URL:https://www.als-mnd.org/event/als-town-hall-from-als-tdi-and-her-als-story-how-can-we-improve-als-diagnosis/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250701T170000
DTEND;TZID=America/Chicago:20250701T170000
DTSTAMP:20260928T190447
CREATED:20250521T162618Z
LAST-MODIFIED:20250521T162618Z
UID:18605-1751389200-1751389200@www.als-mnd.org
SUMMARY:Webinar from EUpALS: ‘Looking after your own mental wellbeing as an ALS community leader’
DESCRIPTION:July 1st at 5:00 PM CEST \nRegistration \nThis session focuses inward – on you and your team – offering space to reflect on the emotional demands of leadership and strategies to protect wellbeing\, prevent your own burnout and compassion fatigue\, and how to create a mentally healthy work environment in your organization. \nThis is the second part of a 2-part webinars series brought to you by EUpALS and supported by Zambon Biotech. They are designed by ALS patient organization leaders for patient organization leaders. Part 1: ‘Supporting your community’s mental wellbeing’ on June 12. \nThese interactive webinars will focus on the rewards\, challenges\, and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds (www.rareminds.org)\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-looking-after-your-own-mental-wellbeing-as-an-als-community-leader/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250626T160000
DTEND;TZID=America/Toronto:20250626T170000
DTSTAMP:20260928T190447
CREATED:20250523T190621Z
LAST-MODIFIED:20250523T190621Z
UID:18607-1750953600-1750957200@www.als-mnd.org
SUMMARY:Webinar Series from Les Turner ALS Foundation: Healey Center Community Webinars
DESCRIPTION:Date: June 26\, 2025 at 4pm ET (3 CT) \nTitle:  Healey Platform Trial Updates & The Les Turner ALS Foundation \nRegistration link: https://partners.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw#/registration \nAbout 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 resources available through the Foundation.   \nAbout the Speakers: \nCatherine Small serves as the Patient Navigator for the HEALEY ALS Platform Trial\, working centrally at the Sean M. Healey & AMG Center for ALS at Mass General Hospital while supporting recruitment and enrollment across more than seventy research centers nationwide. In her role as Patient Navigator\, Catherine leads communication efforts to disseminate information about the Platform Trial and acts as an intermediary between people living with ALS\, caregivers\, clinicians\, and study staff to address questions related to trial participation. Catherine leverages her bachelor’s degree in Neuroscience Psychology and previous clinical experience as a psychometrist to bridge conversations between scientists and the ALS community and build patient-centric partnerships in ALS research.  \nAnne Marie Doyle earned a Bachelor’s degree in Communication Sciences & Disorders from Saint Xavier University followed by a Master’s Degree in Speech & Hearing Sciences from the University of Illinois Urbana-Champaign. \nFor 13 years\, she worked as a speech-language pathologist at Shirley Ryan AbilityLab serving both the inpatient and outpatient populations with a specialty in adult neurological conditions\, including working with people living with ALS. She maintains a membership with the American Speech-Language & Hearing Association and participates in their Special Interest Group for Augmentative and Alternative Communication. She has lectured at the state\, national\, and international level\, as well as participated in clinical research.
URL:https://www.als-mnd.org/event/webinar-series-from-les-turner-als-foundation-healey-center-community-webinars/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250612T170000
DTEND;TZID=America/Chicago:20250612T170000
DTSTAMP:20260928T190447
CREATED:20250521T162310Z
LAST-MODIFIED:20250521T162310Z
UID:18603-1749747600-1749747600@www.als-mnd.org
SUMMARY:Webinar from EUpALS: ‘Supporting your community’s mental wellbeing’
DESCRIPTION:June 12 at 5:00 PM CEST \nRegistration \nThis session will explore how to strengthen the mental and emotional support you offer to the ALS community\, with practical guidance on understanding the different types and levels of support\, making the most of what’s available\, dealing with difficult situations\, and sensitive sign-posting. \nThis is the first part of a 2-part webinars series brought to you by EUpALS and supported by Zambon Biotech. They are designed by ALS patient organization leaders for patient organization leaders. Part 2: ‘Looking after your own mental wellbeing as an ALS community leader’ on July 1.  \nThese interactive webinars will focus on the rewards\, challenges\, and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds (www.rareminds.org)\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-supporting-your-communitys-mental-wellbeing/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250610T150000
DTEND;TZID=America/Toronto:20250610T150000
DTSTAMP:20260928T190447
CREATED:20250604T133152Z
LAST-MODIFIED:20250604T133207Z
UID:18663-1749567600-1749567600@www.als-mnd.org
SUMMARY:ALS Town Hall from  ALS TDI and Her ALS Story: What are Lesser-Known ALS Symptoms?
DESCRIPTION:Join ALS TDI and Her ALS Story (HAS) for the second of a 3-part collaborative Town Hall series\, “Your Story. Our Science.” \nOur journey continues with What Are Lesser-Known ALS Symptoms?\, where we’ll delve into the often-overlooked and less-discussed aspects of living with ALS. Connect with the powerful personal stories of HAS members as they share their experiences with ALS symptoms and the insights they’ve gained within the community. \nALS TDI researchers will discuss how the ARC Study currently tracks symptoms and emphasize the critical need for community feedback to identify symptoms that may not yet be fully understood or recorded. Discover how lived experiences shared by the community are helping to shape ALS research. \nRegister now.
URL:https://www.als-mnd.org/event/als-town-hall-from-als-tdi-and-her-als-story-what-are-lesser-known-als-symptoms-2/
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250603
DTEND;VALUE=DATE:20250607
DTSTAMP:20260928T190447
CREATED:20250225T135838Z
LAST-MODIFIED:20250225T135838Z
UID:18287-1748908800-1749254399@www.als-mnd.org
SUMMARY:ENCALS Meeting 2025
DESCRIPTION:The upcoming ENCALS meeting will be hosted in Turin\, Italy\, from June 3-6\, 2025. Satellite meetings will take place on Tuesday morning (June 3) and Friday (June 6). The program for the satellite meeting depends on the supply by companies. \nRegistration fees\nNormal registration (incl. VAT):\nUntil April 20\, 2025. \n\n(Postgraduate) students: €180\,-\nEstablished researchers (incl. Postdoc): €300\,-\nIndustry: €1200\,-\nINARC member – €75\,- *\n\nLate registration (incl. VAT):\nStarts on April 21\, 2025. Registration closes a few weeks before the event or earlier if we reach capacity. \n\n(Postgraduate) students: €280\,-\nEstablished researchers (incl. Postdoc): €400\,-\nIndustry: €1400\,-\nINARC member – €100\,-*\n\n* Please note that the discounted INARC registration fee is contingent on attending the INARC workshop on June 3rd. Registrants who do not attend the workshop may be required to pay the full ENCALS registration fee.  \nRegistration includes: \n\nParticipation at all ENCALS lectures and poster sessions\nLunches and coffee breaks\nENCALS gala dinner on Thursday June 5\, 2025. This dinner is sponsored by ENCALS.\n\nCancellation\nWritten cancellation received within February 28\, 2025: 50% of the fee will be reimbursed. Cancellations received from March 1\, 2025\, and on: no reimbursements are given. \nClick here to register.
URL:https://www.als-mnd.org/event/encals-meeting-2025/
END:VEVENT
END:VCALENDAR