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X-WR-CALNAME:International Alliance of ALS/MND Associations
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X-WR-CALDESC:Events for International Alliance of ALS/MND Associations
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BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20231025T183000
DTEND;TZID=America/Detroit:20231115T200000
DTSTAMP:20260928T183023
CREATED:20230929T165255Z
LAST-MODIFIED:20230929T165255Z
UID:16639-1698258600-1700078400@www.als-mnd.org
SUMMARY:ALS Canada | Community Services - Creative Wellness For Caregivers
DESCRIPTION:Starting October 25\, learn about the importance of creating a self-care practice to help manage stress and maintain balance. In this four-week workshop\, we’ll discover various self-care practices through guided art and mindfulness exercises. \nRegister for FREE and learn about using art to improve mental health. (Please register by October 18\, 2023) \nRegister now
URL:https://www.als-mnd.org/event/als-canada-community-services-creative-wellness-for-caregivers/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20231025T183000
DTEND;TZID=America/Detroit:20231115T200000
DTSTAMP:20260928T183023
CREATED:20230929T165441Z
LAST-MODIFIED:20230929T165441Z
UID:16638-1698258600-1700078400@www.als-mnd.org
SUMMARY:ALS Canada | Community Services - Creative Wellness For Caregivers
DESCRIPTION:Starting October 25\, learn about the importance of creating a self-care practice to help manage stress and maintain balance. In this four-week workshop\, we’ll discover various self-care practices through guided art and mindfulness exercises. \nRegister for FREE and learn about using art to improve mental health. (Please register by October 18\, 2023) \nRegister now
URL:https://www.als-mnd.org/event/als-canada-community-services-creative-wellness-for-caregivers-2/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/North_Dakota/Center:20231026T120000
DTEND;TZID=America/North_Dakota/Center:20231026T130000
DTSTAMP:20260928T183023
CREATED:20230929T140212Z
LAST-MODIFIED:20230929T140212Z
UID:16654-1698321600-1698325200@www.als-mnd.org
SUMMARY:Webinar from the Les Turner ALS Foundation - Ethical Principles & Informed Consent in Research
DESCRIPTION:About the Program: Informed consent is an essential component of research\, but have you ever wondered why? Join us for our October ALS Learning Series where Emma Schmidt\, Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine will discuss the history behind informed consent\, explain the process of informed consent\, your rights as a research participant and provide you with helpful tips and questions to ask if you’re interested in joining research. \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: Emma Schmidt is the Clinical Research Project Manager at the Les Turner ALS Center at Northwestern Medicine.
URL:https://www.als-mnd.org/event/webinar-from-the-les-turner-als-foundation-ethical-principles-informed-consent-in-research/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20231027T100000
DTEND;TZID=America/Detroit:20231027T160000
DTSTAMP:20260928T183023
CREATED:20230913T135934Z
LAST-MODIFIED:20230913T135934Z
UID:16610-1698400800-1698422400@www.als-mnd.org
SUMMARY:Conference by ALS TDI - The ALS TDI Summit
DESCRIPTION: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.  This year along with the full in-person Summit\, the ALS TDI Summit will be filmed live and streamed over Zoom. Register to attend the 2023 ALS TDI Summit virtually or in person!
URL:https://www.als-mnd.org/event/conference-by-als-tdi-the-als-tdi-summit/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231102T070000
DTEND;TZID=Europe/London:20231102T083000
DTSTAMP:20260928T183023
CREATED:20230103T175549Z
LAST-MODIFIED:20230105T215648Z
UID:15969-1698908400-1698913800@www.als-mnd.org
SUMMARY:WEBINAR: Annual Global Clinical Trials Update
DESCRIPTION: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.
URL:https://www.als-mnd.org/event/webinar-annual-global-clinical-trials-update/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231107T100000
DTEND;TZID=Europe/London:20231107T153000
DTSTAMP:20260928T183023
CREATED:20230913T135909Z
LAST-MODIFIED:20230913T135909Z
UID:16593-1699351200-1699371000@www.als-mnd.org
SUMMARY:Workshop from the MNDA - Respiratory Failure in MND: Secretion Management and Airway Clearance
DESCRIPTION:Date: 7 November 2023\nTime: 10am-3:30pm (registration and coffee from 9:30am)\nCost: £50 View Events Cancellation Policy\nLocation: Newcastle United Football Club\, St James Park\, Newcastle Upon Tyne\, NE1 4ST \nAim: to introduce non respiratory specialist members of the MDT to secretion management and airway clearance. \nObjectives: \nBy the end of the session you will: \n\nbe better able to identify the presenting problems may be when cough augmentation is indicated\nhave been introduced to manual methods of secretion clearance including the Lung Volume Recruitment technique\nbe able to explain secretion clearance and cough assistance techniques in order to support the people with MND in their care and prepare them for the procedures\nhave been introduced to some of the pharmacological options for secretion management\nhave had an opportunity to explore case studies and through knowledge application and discussion identify the presenting problem and the appropriate action to take.
URL:https://www.als-mnd.org/event/workshop-from-the-mnda-respiratory-failure-in-mnd-secretion-management-and-airway-clearance/
LOCATION:Newcastle United Football Club
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231121T100000
DTEND;TZID=Europe/London:20231121T153000
DTSTAMP:20260928T183023
CREATED:20230913T135716Z
LAST-MODIFIED:20230918T133238Z
UID:16596-1700560800-1700580600@www.als-mnd.org
SUMMARY:MND Association Workshop - Respiratory Failure in MND: Secretion Management and Airway Clearance
DESCRIPTION:Date: 21 November 2023\nTime: 10am-3:30pm (registration and coffee from 9:30am)\nCost: £50 View Events Cancellation Policy\nLocation: National Council for Voluntary Organisations (NCVO)\, Society Building\, 8 All Saints Street\, London N1 9RL \nAim: to introduce non respiratory specialist members of the MDT to secretion management and airway clearance. \nObjectives: \nBy the end of the session you will: \n\nbe better able to identify the presenting problems may be when cough augmentation is indicated\nhave been introduced to manual methods of secretion clearance including the Lung Volume Recruitment technique\nbe able to explain secretion clearance and cough assistance techniques in order to support the people with MND in their care and prepare them for the procedures\nhave been introduced to some of the pharmacological options for secretion management\nhave had an opportunity to explore case studies and through knowledge application and discussion identify the presenting problem and the appropriate action to take.
URL:https://www.als-mnd.org/event/workshop-from-mnda-respiratory-failure-in-mnd-secretion-management-and-airway-clearance/
LOCATION:National Council for Voluntary Organisations (NCVO)\, Society Building
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231121T180000
DTEND;TZID=Europe/London:20231121T200000
DTSTAMP:20260928T183023
CREATED:20230912T142904Z
LAST-MODIFIED:20230918T133325Z
UID:16577-1700589600-1700596800@www.als-mnd.org
SUMMARY:From the MND Association - 2023 Annual Stephen Hawking MND Lecture
DESCRIPTION:Effective advance care planning is the important theme of this prestigious event\, which is being organised by the MND Association and the Royal College of Speech and Language Therapists (RCSLT). \nThe lecture will be led by Professor Bee Wee CBE. Bee was National Clinical Director for Palliative and End of Life Care\, NHS England from 2013 – 2023. \nWith thanks to the Hawking Foundation for funding this event.
URL:https://www.als-mnd.org/event/2023-annual-stephen-hawking-mnd-lecture/
LOCATION:Online
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231122T123000
DTEND;TZID=Europe/London:20231122T130000
DTSTAMP:20260928T183023
CREATED:20230913T135758Z
LAST-MODIFIED:20230918T133408Z
UID:16603-1700656200-1700658000@www.als-mnd.org
SUMMARY:From the MND Association - Conversation with an MND Network Coordinator
DESCRIPTION:Time: 12:30pm – 1:00pm \nIn this session Caroline Bidder\, MND Network Coordinator\, Swansea Bay will answer questions about how an MND network operates\, what makes this dispersed model of care the appropriate one\, and the impact it has on people living with and affected by MND. \nNo need to book. Join using the link and passcode below: \nJoin Zoom Meeting: https://us06web.zoom.us/j/88570488079?pwd=OFUydHNnT0c4cEhaNmRTYncxbG9iQT09\nMeeting ID: 885 7048 8079\nPasscode: MNDCWCC \nIf you would like any specific question answered during the session\, please send these to education@mndassociation.org
URL:https://www.als-mnd.org/event/webinar-from-mnda-conversation-with-an-mnd-network-coordinator/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20231128T110000
DTEND;TZID=Europe/London:20231128T123000
DTSTAMP:20260928T183023
CREATED:20230913T135732Z
LAST-MODIFIED:20230913T135732Z
UID:16589-1701169200-1701174600@www.als-mnd.org
SUMMARY:Webinar from the MNDA - Pain Management for MND
DESCRIPTION:Time: 11.00am – 12.30pm \nAim: To increase understanding of how pain may be experienced in MND and potential methods to treat it. \nObjectives: \n\nto examine current practice for pain management in MND\nto evolve our understanding of pain in MND and how to alleviate it\nto explore current thinking and research about pain management and possible future developments.\n\nBy the end of the session participants will have: \n\na more confident understanding of where and why pain occurs in MND\nbeen introduced to options for effective pain management\nan appreciation of emerging research and developments pain management for MND.\n\nSpeaker: Dr Rhys Roberts\, Consultant Neurologist at Addenbrooke’s Hospital – Cambridge
URL:https://www.als-mnd.org/event/webinar-from-the-mnda-pain-management-for-mnd/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231202
DTEND;VALUE=DATE:20231204
DTSTAMP:20260928T183023
CREATED:20230814T174620Z
LAST-MODIFIED:20230814T174937Z
UID:16445-1701475200-1701647999@www.als-mnd.org
SUMMARY:2023 Alliance Meeting
DESCRIPTION:
URL:https://www.als-mnd.org/event/2023-alliance-meeting/
LOCATION:Mövenpick Hotel Basel\, Basel\, Switzerland
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20231204
DTEND;VALUE=DATE:20231206
DTSTAMP:20260928T183023
CREATED:20230814T174756Z
LAST-MODIFIED:20230814T174756Z
UID:16449-1701648000-1701820799@www.als-mnd.org
SUMMARY:2023 Allied Professional Forum
DESCRIPTION:
URL:https://www.als-mnd.org/event/2023-allied-professional-forum/
LOCATION:Mövenpick Hotel Basel or Virtual\, Switzerland
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/North_Dakota/Beulah:20231204T120000
DTEND;TZID=America/North_Dakota/Beulah:20231204T130000
DTSTAMP:20260928T183023
CREATED:20231108T173643Z
LAST-MODIFIED:20231108T173643Z
UID:16747-1701691200-1701694800@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation - Mental Health Needs & Supports for People Living with ALS and their Caregivers
DESCRIPTION:Join us for our December ALS Learning Series with Dr. Melinda S. Kavanaugh. Dr. Kavanaugh will discuss ways in which ALS affects mental health and the need for support – for both the person living with ALS and their caregivers\, including the children and youth. Dr. Kavanaugh will also review recent research findings informing supportive interventions and tools\, targeting support for the whole family. \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. \n  \nAbout the Speaker: \nDr. Kavanaugh is a Professor of Social Work at the Helen Bader School of Social Welfare\, University of Wisconsin-Milwaukee\, and a Licensed Clinical Social Worker (LCSW) in Neurology. Dr. Kavanaugh’s clinical experience informed her focus on clinical care and caregiving research. Her U.S. and international research is funded by the National Institutes for Health (NIH)\, Administration on Community Living (ACL)\, Elizabeth Dole Foundation and the ALS Association. Dr. Kavanaugh’s research focuses on caregiver well-being\, mental health\, and support interventions\, including YCare\, a multidisciplinary youth caregiving skills and support protocol for young carers in ALS\, cancer\, Alzheimer’s disease and Autism. Dr. Kavanaugh is also the president of Global Neuro YCare\, an international non-profit\, focused on developing programs and supports for children\, youth and families in neurological disorders in underserved areas. \nRegistration link: https://attendee.gotowebinar.com/register/8171566454290953819
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-mental-health-needs-supports-for-people-living-with-als-and-their-caregivers/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/North_Dakota/New_Salem:20231215T120000
DTEND;TZID=America/North_Dakota/New_Salem:20231215T130000
DTSTAMP:20260928T183023
CREATED:20231215T105957Z
LAST-MODIFIED:20231215T105957Z
UID:16822-1702641600-1702645200@www.als-mnd.org
SUMMARY:Webinar from the Les Turner Foundation: A conversation with a genetic counselor: Could the ALS in my family be genetic?
DESCRIPTION:Title: A conversation with a genetic counselor: Could the ALS in my family be genetic? \nSpeaker: Laynie Dratch \nDate/Time: Wednesday\, January 31\, 2024 at 12:00pm CST \nLink to register: https://attendee.gotowebinar.com/register/233260727250953046 \nAbout the Program: About the Program: 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\, and more. Laynie welcomes you to come with questions for discussion. \nAbout the Speaker: Laynie Dratch\, ScM CGC is a board-certified genetic counselor for the Penn Frontotemporal Degeneration (FTD) Center and Penn Amyotrophic Lateral Sclerosis (ALS) Center in the Department of Neurology at the University of Pennsylvania. She is the co-founder and chair of the ALS/FTD Working Group within the National Society of Genetic Counselor’s Neurogenetics group\, as well as the co-founder of the annual Penn Familial FTD/ALS Conference. Her research interests include the lived experiences of individuals at risk of developing ALS/FTD spectrum disorders\, and genetic counseling access and service delivery. Laynie completed her master’s in genetic counseling at the Johns Hopkins University / National Institutes of Health genetic counseling training program and completed her undergraduate studies at Colgate University where she graduated summa cum laude with a BA in neuroscience and a minor in psychology.
URL:https://www.als-mnd.org/event/webinar-from-the-les-turner-foundation-a-conversation-with-a-genetic-counselor-could-the-als-in-my-family-be-genetic/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240221T070000
DTEND;TZID=America/Toronto:20240221T070000
DTSTAMP:20260928T183023
CREATED:20240119T184159Z
LAST-MODIFIED:20240119T184159Z
UID:16860-1708498800-1708498800@www.als-mnd.org
SUMMARY:Webinar from the International Alliance of ALS/MND Association: Nutrition in ALS/MND
DESCRIPTION:February 21\, 2024 – 7AM ET\nThis webinar will provide an understanding of the importance of nutrition in ALS/MND. We will address nutritional changes upon diagnosis\, considerations for bulbar onset ALS/MND\, and the myths and benefits of feeding tubes. \nRegister Now
URL:https://www.als-mnd.org/event/webinar-from-the-international-alliance-of-als-mnd-association-nutrition-in-als-mnd/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240221T150000
DTEND;TZID=America/Toronto:20240221T180000
DTSTAMP:20260928T183023
CREATED:20240119T184916Z
LAST-MODIFIED:20240119T185029Z
UID:16862-1708527600-1708538400@www.als-mnd.org
SUMMARY:Virtual Conference from the Penn Frontotemporal Degeneration (FTD) Center: Uncovering the Genetics of FTD/ALS
DESCRIPTION:The Penn Frontotemporal Degeneration (FTD) Center is excited to open registration for our fourth annual familial conference\, Uncovering the Genetics of FTD/ALS\, on Wednesday\, February 21st\, 3:00PM to 6:00PM EST. Please register by visiting www.pennmedicine.org/FTDCFamilialConference2024. This event will take place virtually and the link will be provided once you’ve registered. \n  \nOur team understands ALS\, FTD\, and related disorders can impact an entire family even when just one person is diagnosed. However\, we also recognize the unique challenges and situations that arise from familial or genetic diseases. We have designed this exclusive event to recognize and address these topics for people living with or at risk for a familial and/or genetic form of FTD/ALS. You will have the chance to hear from genetic counselors\, neurologists\, and social workers on the genetics of FTD and ALS and have the chance to ask your questions in real-time. \n  \nTo view the conference agenda\, make a gift\, or learn about sponsorship opportunities\, please visit our website at https://www.pennftdcenter.org/familial-conference. If you have any questions\, please reach out to us at PennFTDC@pennmedicine.upenn.edu. \n  \nThank you for your interest\, and we look forward to seeing you virtually on February 21\, 2024.
URL:https://www.als-mnd.org/event/virtual-conference-from-the-penn-frontotemporal-degeneration-ftd-center-uncovering-the-genetics-of-ftd-als/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240301T120000
DTEND;TZID=America/Toronto:20240301T130000
DTSTAMP:20260928T183023
CREATED:20240214T112511Z
LAST-MODIFIED:20240214T112511Z
UID:16936-1709294400-1709298000@www.als-mnd.org
SUMMARY:Webinar from NEALS: The Benefits of Macronutrients in People Living with ALS: What Should We Eat?
DESCRIPTION: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 associated with slower disease progression in ALS.
URL:https://www.als-mnd.org/event/webinar-from-neals-the-benefits-of-macronutrients-in-people-living-with-als-what-should-we-eat/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240307T040000
DTEND;TZID=America/Toronto:20240307T050000
DTSTAMP:20260928T183023
CREATED:20240307T124537Z
LAST-MODIFIED:20240307T124537Z
UID:17051-1709784000-1709787600@www.als-mnd.org
SUMMARY:Webinar from Alliance: State of Play: How tech research can help living with MND
DESCRIPTION:We are kicking off State of Play for 2024 with a look at how tech research can help people living with MND. MND Australia’s Dr Ben O’Mara will talk about the ‘Game on with MND’ project looking at how we can make gaming more accessible for people with MND and Dr Taylor Dick from the University of Queensland will talk about exoskeletons as mobility aids.
URL:https://www.als-mnd.org/event/webinar-from-alliance-state-of-play-how-tech-research-can-help-living-with-mnd/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240314T070000
DTEND;TZID=America/Toronto:20240314T080000
DTSTAMP:20260928T183023
CREATED:20240314T155747Z
LAST-MODIFIED:20240314T155812Z
UID:17079-1710399600-1710403200@www.als-mnd.org
SUMMARY:Webinar from Alliance: Respiratory Support in ALS/MND
DESCRIPTION: \nThis 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 traqueostomy\, how it works\, and considerations.\n \nPresenter: Susan Brumby
URL:https://www.als-mnd.org/event/webinar-from-alliance-respiratory-support-in-als-mnd/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240318T163000
DTEND;TZID=America/Toronto:20240318T173000
DTSTAMP:20260928T183023
CREATED:20240214T112653Z
LAST-MODIFIED:20240214T112653Z
UID:16938-1710779400-1710783000@www.als-mnd.org
SUMMARY:Webinar from NEALS: The Science Behind ALS Treatments: Riluzole\, Radicava\, and Relyvrio
DESCRIPTION:Moderated by Dr. 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\, Dr. Lauren Elman\, Dr. John Novak\, and Dr. Xiaowei (Bill) Su will present information on Riluzole\, Radicava\, and Relyvrio\, including drug mechanism\, findings from clinical trials\, and potential benefits\, risks\, and costs.
URL:https://www.als-mnd.org/event/webinar-from-neals-the-science-behind-als-treatments-riluzole-radicava-and-relyvrio/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240327T080000
DTEND;TZID=America/Toronto:20240327T090000
DTSTAMP:20260928T183023
CREATED:20240320T210230Z
LAST-MODIFIED:20240320T210230Z
UID:17133-1711526400-1711530000@www.als-mnd.org
SUMMARY:Webinar from Alliance: ALS/MND Platform Trials Update
DESCRIPTION:This webinar will provide information on ALS/MND platform trials. We will hear from HEALEY\, MAGNET and SMART. \nThey will update us on their approach\, recruitment\, trial eligibility and their latest news. \nModerator:  \nDr. Nicholas Cole – Chair of Scientific Advisory \nCouncil Panel:  \nDr. Sabrina Paganoni – HEALEY Trial \nDr. Ruben van Eijk – MAGNET Trial \nDr. Suvankar Pal – SMART Trial
URL:https://www.als-mnd.org/event/webinar-from-alliance-als-mnd-platform-trials-update/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20240328T120000
DTEND;TZID=America/Chicago:20240328T130000
DTSTAMP:20260928T183023
CREATED:20240228T175221Z
LAST-MODIFIED:20240228T175221Z
UID:17028-1711627200-1711630800@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: The role of multidisciplinary care in ALS
DESCRIPTION:Title: The role of multidisciplinary care in ALS \nDate/Time: Thursday\, March 28\, 2024 at noon CST \nLink to register: https://attendee.gotowebinar.com/register/7883989190684308310 \nAbout the Program: \nJoin 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 higher quality of life. From exploring treatment options to providing emotional support\, our panel will illustrate how this approach significantly enhances the well-being of people living with ALS\, their families\, and caregivers. \nThis webinar will also discuss the ALS Better Care Act (HR 5663/S.3258)\, which will enhance Medicare reimbursement for multidisciplinary clinics nationwide\, improving care for people living with ALS. You’ll learn how you can get involved in supporting this legislation. \nAbout the Speakers: \nChaunelle Caver-Perkins\, Support Services Committee Member\, Les Turner ALS Foundation \nJanie Gobeli\, advisory committee member for the HEALEY ALS Platform Trial and the QurAlis/CISCRP Global Patient Advisory Board\, ALS Research Ambassador for the Northeast ALS Consortium (NEALS)\, and a reviewer for the Les Turner ALS Foundation’s educational materials and programs. \nFrank Granata\, member of the Foundation’s Board of Directors and Support Services Committee Member\, Les Turner ALS Foundation \nApril Szymanksi\, RN\, MSN\, APN-BC\, Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine \nLauren Webb\, LCSW\, Chief Advocacy & Outreach Officer\, Les Turner ALS Foundation
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-the-role-of-multidisciplinary-care-in-als/
LOCATION:Zoom Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240403T150000
DTEND;TZID=America/Toronto:20240403T160000
DTSTAMP:20260928T183023
CREATED:20240312T171246Z
LAST-MODIFIED:20240312T171246Z
UID:17068-1712156400-1712160000@www.als-mnd.org
SUMMARY:ALS Town Hall from ALS TDI: Light the Way – A New Approach to Genetic Testing
DESCRIPTION:Wednesday\, April 3\, 2024 | 3:00 – 4:00pm EDT \nParticipate 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.  \nWith the recent approval of a new gene therapy for people living with SOD1 ALS and the potential for IVF to prevent passing on genes to future generations\, it is now more important than ever to offer comprehensive genetic education\, counseling\, and rapid testing to the whole community. However research suggests there are inconsistent approaches and multiple barriers to getting people the information and support they need.  \nHear from researcher-turned-advocate Dr Paul Wicks how with the support of a grant from the UK government\, his team at Sano Genetics have built a new online platform that offers no-cost genetic education\, counseling\, testing\, peer support\, and connection to research. Ultimately\, the goal is to build a multi-language\, multi-national platform that could pave the way for clinical trials in gene carriers to prevent ALS from starting in the first place.  \nWhy should you attend? \n\nUnderstand the pros and cons of knowing your genetic status\nLearn more about the Light the Way genetics program\nEngage with the ALS community\n Ask questions straight from the source
URL:https://www.als-mnd.org/event/als-town-hall-from-als-tdi-light-the-way-a-new-approach-to-genetic-testing/
LOCATION:Online
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240415T130000
DTEND;TZID=America/Toronto:20240415T140000
DTSTAMP:20260928T183023
CREATED:20240401T182558Z
LAST-MODIFIED:20240401T182800Z
UID:17634-1713186000-1713189600@www.als-mnd.org
SUMMARY:Webinar from  Les Turner ALS Foundation: Navigating Advanced Directives
DESCRIPTION:Title: Navigating Advanced Directives \nDate/Time:  Monday\, April 15th at noon CST \nRegistration link: https://attendee.gotowebinar.com/register/8687536477912516955 \nAbout 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 page when it comes to treatments you may or may not want. Join us for our next ALS Learning series where our speakers will further discuss advanced directives\, their benefits\, and what you need to know to make an informed decision. These discussions are not easy but taking the time to gather information and think about your values is a powerful gift for yourself and your family. \nAbout the presenters: Giulia LaBellarte is an adult-gerontology nurse practitioner who specializes in palliative care at Northwestern Memorial Hospital in Chicago. \nDr. John M. Coleman III\, is a pulmonary physician in the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine\, providing respiratory care and support for people living with ALS
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-navigating-advanced-directives/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240424T090000
DTEND;TZID=America/Toronto:20240424T100000
DTSTAMP:20260928T183023
CREATED:20240320T210437Z
LAST-MODIFIED:20240320T210534Z
UID:17135-1713949200-1713952800@www.als-mnd.org
SUMMARY:Webinar from Alliance: Mental Health in ALS/MND
DESCRIPTION: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 other activities that will provide happiness and enjoyment.
URL:https://www.als-mnd.org/event/webinar-from-alliance-mental-health-in-als-mnd/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240529T070000
DTEND;TZID=America/Toronto:20240529T080000
DTSTAMP:20260928T183023
CREATED:20240320T210756Z
LAST-MODIFIED:20240320T210820Z
UID:17137-1716966000-1716969600@www.als-mnd.org
SUMMARY:Webinar from Alliance: Respiratory Support in ALS/MND
DESCRIPTION: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 traqueostomy\, how it works\, and considerations. \nPresenter: Susan Brumby
URL:https://www.als-mnd.org/event/webinar-from-alliance-respiratory-support-in-als-mnd-2/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240530T190000
DTEND;TZID=America/Toronto:20240530T190000
DTSTAMP:20260928T183023
CREATED:20240426T115931Z
LAST-MODIFIED:20240426T120032Z
UID:17764-1717095600-1717095600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Developing Tools to Help People Living with ALS Make Difficult Decisions
DESCRIPTION:About the program: \nPeople 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 that support people living with ALS to make informed choices for their care and quality of life. \nAbout the speaker: \nDr Anne Hogden PhD\, B SpPath\, BA (Hons) is a Senior Lecturer and researcher with the School of Population Health\, Faculty of Medicine and Health\, University of New South Wales\, Australia. She is a serving member of MND Research Australia\, MND Australia Research Committee\, The MND Collective Board and MND Collective Clinical Care working group. Her work focuses on patient decision support tool development for MND/ALS care. She has authored the first-ever MND/ALS patient decision support tool in Australia and assisted in similar tool development in the UK and USA. \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.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-developing-tools-to-help-people-living-with-als-make-difficult-decisions/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240619T173000
DTEND;TZID=America/Toronto:20240619T203000
DTSTAMP:20260928T183023
CREATED:20240525T122213Z
LAST-MODIFIED:20240525T122213Z
UID:17816-1718818200-1718829000@www.als-mnd.org
SUMMARY:Webinar from The MND Association of South Africa and Genoa Underwriting Managers
DESCRIPTION:DAY 1 | MEDICAL | Aetiology\, Diagnosis and Genetics \nAUDIENCE | General Practitioners\, Neurologists\, Nursing fraternity and Allied health practitioners \nThe Motor Neuron Disease Association of South Africa and Genoa Underwriting Managers are delighted to invite you to a webinar hosted via the Zoom platform.  \nHosted over 3 days\, local and international guest speakers will discuss Motor Neuron Disease. Local and international guest speakers will discuss Motor Neuron Disease. Medical\, Management and Ethical aspects. All proceeds will go to towards the running of the Motor Neuron Disease Association of SA.  \nMedical and Ethics CPD/CEU points are available.
URL:https://www.als-mnd.org/event/webinar-from-the-mnd-association-of-south-africa-and-genoa-underwriting-managers/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240620T130000
DTEND;TZID=America/Toronto:20240620T140000
DTSTAMP:20260928T183023
CREATED:20240603T203004Z
LAST-MODIFIED:20240603T203004Z
UID:17854-1718888400-1718892000@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: How to Control your Phone with your Voice
DESCRIPTION:About the Program \nWhat 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 Androids\, you’ll wonder why these free and easy-to-use software utilities aren’t well known! These voice tools are truly good news for people living with ALS. \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 and Mitsubishi Tanabe Pharma America for sponsoring this webinar. \nAbout the Speaker \nEddy Ehrlich is the Assistive Technology Specialist at Bridging Voice. He came to the field of Assistive Technology through his combination training as an occupational therapist and a mechanical engineer and has provided evaluations and trainings to people in various settings: schools\, hospitals\, and homes. Eddy specializes in computer access and augmentative communication. Over the past 30 years he has seen promising emerging technologies transform into powerful products for people with disabilities including voice-control and eye-tracking. Eddy has been a salesperson and a therapist but has always seen himself as an assistive technology educator\, believing that knowledgeable consumers evolve into more powerful and independent tech users. Eddy works patiently but diligently to train people in expanding their technical skills because poorly implemented technology solutions can be so overwhelming and frustrating. Eddy has been with Bridging Voice nearly since its beginning in 2019\, now working nationally [and all over the world] with a team of 10 experts to remove the access barriers between people with ALS and communication.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-how-to-control-your-phone-with-your-voice/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240620T173000
DTEND;TZID=America/Toronto:20240620T203000
DTSTAMP:20260928T183023
CREATED:20240525T122934Z
LAST-MODIFIED:20240525T122934Z
UID:17821-1718904600-1718915400@www.als-mnd.org
SUMMARY:Webinar from The MND Association of South Africa and Genoa Underwriting Managers
DESCRIPTION:DAY 2 | MANAGEMENT | Disease Progression Management \nAUDIENCE | All medical and allied medics involved in the treatment and management of MND patients \nThe Motor Neuron Disease Association of South Africa and Genoa Underwriting Managers are delighted to invite you to a webinar hosted via the Zoom platform.  \nHosted over 3 days\, local and international guest speakers will discuss Motor Neuron Disease. Local and international guest speakers will discuss Motor Neuron Disease. Medical\, Management and Ethical aspects. All proceeds will go to towards the running of the Motor Neuron Disease Association of SA.  \nMedical and Ethics CPD/CEU points are available.
URL:https://www.als-mnd.org/event/webinar-from-the-mnd-association-of-south-africa-and-genoa-underwriting-managers-2/
LOCATION:Zoom Webinar
END:VEVENT
END:VCALENDAR