BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//International Alliance of ALS/MND Associations - ECPv6.8.3//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-WR-CALNAME:International Alliance of ALS/MND Associations
X-ORIGINAL-URL:https://www.als-mnd.org
X-WR-CALDESC:Events for International Alliance of ALS/MND Associations
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:America/Chicago
BEGIN:DAYLIGHT
TZOFFSETFROM:-0600
TZOFFSETTO:-0500
TZNAME:CDT
DTSTART:20250309T080000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0500
TZOFFSETTO:-0600
TZNAME:CST
DTSTART:20251102T070000
END:STANDARD
TZID:America/Toronto
BEGIN:DAYLIGHT
TZOFFSETFROM:-0500
TZOFFSETTO:-0400
TZNAME:EDT
DTSTART:20250309T070000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:-0400
TZOFFSETTO:-0500
TZNAME:EST
DTSTART:20251102T060000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250701T170000
DTEND;TZID=America/Chicago:20250701T170000
DTSTAMP:20261001T075426
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:20250710T150000
DTEND;TZID=America/Toronto:20250710T160000
DTSTAMP:20261001T075426
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/Toronto:20250724T130000
DTEND;TZID=America/Toronto:20250724T140000
DTSTAMP:20261001T075426
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:20261001T075426
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
END:VCALENDAR