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X-WR-CALDESC:Events for International Alliance of ALS/MND Associations
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DTSTART;VALUE=DATE:20250603
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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/
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DTSTART;TZID=America/Toronto:20250610T150000
DTEND;TZID=America/Toronto:20250610T150000
DTSTAMP:20261001T082701
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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/
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DTSTART;TZID=America/Chicago:20250612T170000
DTEND;TZID=America/Chicago:20250612T170000
DTSTAMP:20261001T082701
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
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DTSTART;TZID=America/Toronto:20250626T160000
DTEND;TZID=America/Toronto:20250626T170000
DTSTAMP:20261001T082701
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
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