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DTSTART;TZID=America/Toronto:20250424T130000
DTEND;TZID=America/Toronto:20250424T140000
DTSTAMP:20260928T210138
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UID:18355-1745499600-1745503200@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: The ALS Exposome: How Environmental Exposures Inform Disease Risk and Prevention
DESCRIPTION:About the Program\nJoin us for our April ALS Learning Series with Dr. Goutman\, neurologist\, from University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence ALS. A Q&A will follow. \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\, & Biogen for sponsoring this webinar. \nAbout the Speaker\nStephen Goutman\, MD\, MS\, FAAN is the Harriet Hiller Research Professor\, an Associate Professor in the Department of Neurology\, Director of the Pranger Amyotrophic Lateral Sclerosis Clinic\, and Associate Director of the ALS Center of Excellence at Michigan Medicine. After obtaining a degree in neuroscience at the Johns Hopkins University\, Dr. Goutman completed his medical degree at the University of Chicago Pritzker School of Medicine and his neurology residency and neuromuscular fellowship at Cleveland Clinic. He received a Master’s in Clinical Research Design and Statistical Analysis at the University of Michigan. \nInspired by his patients\, Dr. Goutman’s research focuses on identifying new mechanisms and therapies for ALS. Specifically\, he has been seeking to understand the genetic and environmental interactions that alter susceptibility to ALS\, especially in the State of Michigan\, which has some of the highest rates of ALS in the country. With funding from the National Institutes of Health\, the Centers for Disease Control and Prevention\, and the ALS Association\, he is discovering environmental risk factors associated with the onset and progression of ALS by collecting epidemiologic exposure surveys and biofluids from individuals with and without ALS. He shares an ultimate goal to one day make ALS a preventable disease. \nRegister Now
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-the-als-exposome-how-environmental-exposures-inform-disease-risk-and-prevention/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250522T130000
DTEND;TZID=America/Toronto:20250522T170000
DTSTAMP:20260928T210138
CREATED:20250505T133432Z
LAST-MODIFIED:20250505T133432Z
UID:18480-1747918800-1747933200@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Tackling the Delay to ALS Diagnosis: How Can We Do Better?
DESCRIPTION:About the Program  \nJoin 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. \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  \nKelly Gwathmey is an Associate Professor of Neurology at Virginia Commonwealth University in Richmond\, Virginia. She studied Neuroscience and Behavioral Biology at Emory University in Atlanta\, Georgia. She then attended Eastern Virginia Medical School in Norfolk\, Virginia. Her Neurology and Clinical Neurophysiology training was completed at the University of Virginia. Following this\, she completed a Neuromuscular Medicine fellowship at both Brigham and Women’s Hospital and Massachusetts General Hospital in Boston. At the University of Virginia\, she started the multidisciplinary MDA clinic\, was co-director of the ALS clinic\, and was the fellowship director for both the Neuromuscular and Clinical Neurophysiology fellowships. She joined VCU in January 2019 and currently serves in the capacity of Neuromuscular Division Chair\, Neuromuscular Medicine Program Director and EMG Laboratory Director. Dr. Gwathmey sees a wide spectrum of neuromuscular patients and performs electrodiagnostic studies (nerve conduction studies and electromyography). Her research interests include environmental risk factors in ALS\, diagnostic delay in ALS\, and racial disparities in healthcare.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-tackling-the-delay-to-als-diagnosis-how-can-we-do-better/
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:20260928T210138
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:20250626T160000
DTEND;TZID=America/Toronto:20250626T170000
DTSTAMP:20260928T210138
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:20250701T170000
DTEND;TZID=America/Chicago:20250701T170000
DTSTAMP:20260928T210138
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:20250724T130000
DTEND;TZID=America/Toronto:20250724T140000
DTSTAMP:20260928T210138
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:20250729T130000
DTEND;TZID=America/Toronto:20250729T140000
DTSTAMP:20260928T210138
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=Europe/London:20251002T170000
DTEND;TZID=Europe/London:20251002T180000
DTSTAMP:20260928T210138
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=Europe/London:20251009T170000
DTEND;TZID=Europe/London:20251009T180000
DTSTAMP:20260928T210138
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
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