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DTSTART;TZID=America/Toronto:20250206T130000
DTEND;TZID=America/Toronto:20250206T140000
DTSTAMP:20261010T034040
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UID:18249-1738846800-1738850400@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Family Caregivers: Angels in Agony
DESCRIPTION:About the Program \nEvery caregiver — and every caregiving journey — is unique\, but there are some commonalities among caregivers of family members living with ALS. Most say caregiving is at the same time challenging\, exhausting\, rewarding\, and full of unexpected emotions. Linda Levine is a caregiver for her husband David Buseck\, a person with ALS. Together they share how they try daily to strike a balance between stepping up for the needs of the other while maintaining their own identities and wellness. Join us as they share tools illustrated by real life\, relatable\, examples that will help caregivers feel better\, rather than bitter\, at the end of the day. \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  \nLinda Levine\, M.Ed\, trained as a Recreational Therapist and educator. She has applied those skills to help people find fulfilling lives using wheelchairs\, communication devices\, and adaptive equipment. She taught for 30 years at San Jose State University\, including courses on diverse topics such as creating a meaningful life\, creativity\, identity\, play\, grief and loss. As a life coach\, Linda specializes in helping people move through change\, whether that is the loss of a loved one\, retirement\, career challenges\, or just about anything else. In her role as a motivational speaker\, she speaks about Caregiving\, Team-building\, Grief and even Clumsy Sex and ALS. Linda has a gift for taking on tough topics with sensitivity and refreshing humor. \nDavid Buseck\, MS\, is a retired engineer who worked with radiation oncology equipment. He was diagnosed with ALS in 2019. He is a board member with the ALS Network and is active in various forms of ALS advocacy. He enjoys playing flute\, reading\, traveling\, and writing. In 2024\, he published Paris: City of Cultures.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-family-caregivers-angels-in-agony/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250115T130000
DTEND;TZID=America/Toronto:20250115T140000
DTSTAMP:20261010T034040
CREATED:20250114T212413Z
LAST-MODIFIED:20250114T212413Z
UID:18208-1736946000-1736949600@www.als-mnd.org
SUMMARY:Webinar from NEALS: Expanded Access Programs in ALS: What Have We Learned\, Where Do We Go from Here?
DESCRIPTION:In this webinar\, Drs. Andrews\, Babu and Bedlack will explain what Expanded Access Programs (EAPs) are and how they differ from other pathways by which people living with ALS can access experimental products. They will review what we have learned from recent EAPs\, what is happening with the current ones\, and where they hope to see EAPs go in the future. They will highlight reliable places to find more information on EAPs. \nYou can register directly through this link and receive a webinar reminder: Webinar Registration
URL:https://www.als-mnd.org/event/webinar-from-neals-expanded-access-programs-in-als-what-have-we-learned-where-do-we-go-from-here/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20241114T110000
DTEND;TZID=America/Toronto:20241114T120000
DTSTAMP:20261010T034040
CREATED:20241107T131814Z
LAST-MODIFIED:20241107T131814Z
UID:18125-1731582000-1731585600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation - Stitching Strength: What I have learned about hope in ALS and how I am trying to weave that into my practice
DESCRIPTION:About the Program \nJoin us for our November ALS Learning Series about hope with Dr. Richard Bedlack. In this talk\, Dr. Bedlack will review what he has learned about hope in health and diseases\, including ALS. He’ll talk about why it matters\, where it comes from\, what clinicians do to boost and to suppress it\, and how he is trying to optimize it in his own clinic. \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 \nDr. Richard Bedlack grew up in a small town in central Connecticut. He went to college at William and Mary in Virginia\, then back to Connecticut for an MD and Ph.D. in Neuroscience at UConn. Finally\, he came to Duke where he completed his Medicine Internship\, Neurology Residency\, Neuromuscular Fellowship\, and Masters in Clinical Research Science. He is currently the Stewart\, Hughes\, and Wendt Distinguished Professor of ALS at Duke and Director of the Duke ALS Clinic. He has won awards for teaching and patient care\, received ALS research grants\, participated in ALS clinical trials\, and published more than 160 ALS articles. He is the leader of the international ALSUntangled program which utilizes social networking to investigate alternative and off-label treatment options for patients with ALS\, and leader of the ALS Reversals program which attempts to understand why some people with ALS recover from it\, and to make this happen more often. He lives in Durham\, North Carolina with his wife Shelly\, two mischievous cats\, and a closet full of eye-catching blazers.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-stitching-strength-what-i-have-learned-about-hope-in-als-and-how-i-am-trying-to-weave-that-into-my-practice/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20241106T070000
DTEND;TZID=America/Toronto:20241106T080000
DTSTAMP:20261010T034040
CREATED:20240811T142542Z
LAST-MODIFIED:20240811T142542Z
UID:17928-1730876400-1730880000@www.als-mnd.org
SUMMARY:Annual Clinical Trials Update
DESCRIPTION:This webinar will provide information on ALS/MND treatments currently in 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/annual-clinical-trials-update/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20241031T130000
DTEND;TZID=America/Toronto:20241031T140000
DTSTAMP:20261010T034040
CREATED:20241001T194824Z
LAST-MODIFIED:20241001T194824Z
UID:18043-1730379600-1730383200@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation - Complementary & Alternative Therapies for People Living with ALS
DESCRIPTION:About the Program \nJoin us for our October ALS Learning Series where Dr. Tavee will discuss complementary and alternative therapies for people living with ALS. These therapies can play a major role in helping people living with ALS feel better. Dr. Tavee will cover areas like nutrition\, exercise and mind body therapies with a Q&A to 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 \nJinny Tavee\, MD is the Chief\, Division of Neurology\, Department of Medicine at National Jewish Health. Dr. Tavee has a special interest in integrative holistic medicine and teaches meditation to medical students\, patients and physicians from all over the world. She is actively involved in researching the effects of meditation on chronic neurologic diseases and has led meditation retreats for cancer survivors and injured U.S. Marines returning from the Gulf War through the Wounded Warriors program. She just completed a clinical trial evaluating the use of yoga breathing for people living with ALS.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-complementary-alternative-therapies-for-people-living-with-als/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240930T160000
DTEND;TZID=America/Toronto:20240930T170000
DTSTAMP:20261010T034040
CREATED:20240918T131207Z
LAST-MODIFIED:20240918T131207Z
UID:18003-1727712000-1727715600@www.als-mnd.org
SUMMARY:Webinar from NEALS - At the Crossroads: Advanced Respiratory Care in ALS
DESCRIPTION:Join us for the final installment in the “Advanced Respiratory Care in ALS” series as we delve into the complexities of respiratory failure in ALS. This session will focus on crucial end-of-life and quality of life considerations\, aiming to facilitate timely advanced directives. Our expert presenters will discuss key aspects of respiratory care\, including the medical management of breathlessness and the decision-making process between non-invasive and tracheostomy-invasive ventilation. \nKey Topics: \n\nApproach to Goals of Care\nManagement of Breathlessness in ALS\nTracheostomy-Invasive Ventilation\n\nThis webinar is designed for healthcare professionals\, caregivers\, and people living with ALS seeking valuable insights into managing respiratory issues in ALS. Join us to enhance your understanding and improve patient care through informed decision-making. \nPresenters: \nPaula Brockenbrough\, CRT VCU Health \nAnne Shields\, LCSW VCU Health \nDavid J. Rothman\, PhD\, LCP VCU Health \nWon Lee\, MD UT Southwestern \nMolly Kilpatrick\, MD\, FAAHPM Mayo Clinic \nModerators: \nEufrosina Young\, MD Upstate Medical University \nBenajmin Rix Brooks\, MD Atrium Health
URL:https://www.als-mnd.org/event/webinar-from-neals-at-the-crossroads-advanced-respiratory-care-in-als/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240925T130000
DTEND;TZID=America/Toronto:20240925T140000
DTSTAMP:20261010T034040
CREATED:20240918T130817Z
LAST-MODIFIED:20240918T130817Z
UID:18000-1727269200-1727272800@www.als-mnd.org
SUMMARY:Webinar from NEALS - Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One
DESCRIPTION:Join us for the NEALS webinar\, “Feeding Tubes for People Living with ALS: What You Need to Know Before Getting One.” Presenter Molly Spitz\, RD\, an ALS-focused registered dietitian from Barnes Jewish Hospital in St. Louis\, MO\, will share essential information and insights about feeding tubes. Don’t miss this opportunity to learn and ask questions during this webinar\, moderated by Stephanie Dobak MS\, RD\, LDN\, CNSC and hosted by the NEALS Nutrition Committee.
URL:https://www.als-mnd.org/event/webinar-from-neals-feeding-tubes-for-people-living-with-als-what-you-need-to-know-before-getting-one/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240915T130000
DTEND;TZID=America/Toronto:20240915T140000
DTSTAMP:20261010T034040
CREATED:20240906T160934Z
LAST-MODIFIED:20240906T160934Z
UID:17974-1726405200-1726408800@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation - Open Enrollment Matters: Health Insurance Considerations for People Diagnosed with ALS
DESCRIPTION:Title:  Open Enrollment Matters: Health Insurance Considerations for People Diagnosed with ALS \nRegistration Link: https://us02web.zoom.us/webinar/register/WN_6A8UOAtqR2eiOF9RJUYz9A#/registration \nAbout the Program  \nOpen Enrollment is the time each year when consumers can sign up or make changes to their health insurance coverage. This presentation will outline why you should care about Open Enrollment\, factors to consider when enrolling in a new plan\, and the importance of choosing your plan wisely\, especially for those diagnosed with ALS. We will touch on commercial health insurance as well as Medicare. Please join us! \nAbout the Speakers \nEmily works as the Patient Education Content & Project Manager for Patient Advocate Foundation. In this role\, she develops new educational materials including publications\, educational webinars\, and special projects that help prevent and address the healthcare barriers patients may face. \nPreviously\, Emily worked as a clinical case manager at PAF. She frequently worked on difficult cases helping patients with insurance appeals related to access to novel and experimental treatments. She has extensive experience with Medicare\, medical debt crisis\, and long-term care issues\, and possesses a breadth of knowledge of federal\, state\, and local assistance programs. \nBefore joining PAF\, Emily worked as the Social Services Coordinator at a skilled nursing facility and as a Social Worker in an adult daycare setting. She has a bachelor’s degree in social work from Christopher Newport University in Newport News\, Virginia. Emily enjoys traveling with her husband and being a mom to twin girls! \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.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-open-enrollment-matters-health-insurance-considerations-for-people-diagnosed-with-als/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240829T130000
DTEND;TZID=America/Toronto:20240829T140000
DTSTAMP:20261010T034040
CREATED:20240801T150926Z
LAST-MODIFIED:20240801T150926Z
UID:17909-1724936400-1724940000@www.als-mnd.org
SUMMARY:Webinar from Les Turner Foundation: Empower your voice: Navigating conversations with your ALS care team
DESCRIPTION:Date/Time:  Thursday\, August 29\, 2024 at 12pm CST \nTitle: Empower your voice: Navigating conversations with your ALS care team \nRegistration Link: https://us02web.zoom.us/webinar/register/WN_9ZTnqnxhQZ6yIkLTNOZ8Wg \nAbout the Program: Join us for our August ALS Learning Series on advocating for yourself and effectively communicating with your ALS health team\, presented by Dr. Ambereen Mehta and Dr. Suzana Makowski\, two leading palliative care ALS experts. This session will provide people living with ALS\, their families\, and care partners with practical strategies to ensure their voices are heard and their needs are met\, fostering a collaborative approach to 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: \nAmbereen Mehta\, MD\, MPH\, FAAHPM\, is an Associate Professor of Palliative Care in the Departments of Medicine and Neurology at the Johns Hopkins School of Medicine. She graduated from the Internal Medicine residency at the Johns Hopkins Bayview Medical Center and Hospice and Palliative Medicine fellowship at the National Institutes of Health. She is currently part of the palliative care faculty at Johns Hopkins and developed the palliative care program in the Johns Hopkins Center for Specialty ALS Care. \nSuzana K.E. Makowski\, MD\, is currently the medical director of Compassionate Care ALS\, a non-profit group that supports patients and families living with ALS throughout the US. She has worked as a palliative care physician in various academic and community settings: as Chief of Palliative Medicine at both Unity Hospital\, Exeter Hospital in New Hampshire\, co-chief of Palliative Care at UMass Medical Center and Chan School of Medicine\, where she still holds a voluntary Associate Professor of Medicine role\, teaching and mentoring students\, and as Hospice Medical Director at Hospice and Palliative Care of Cape Cod.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-foundation-empower-your-voice-navigating-conversations-with-your-als-care-team/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240621T173000
DTEND;TZID=America/Toronto:20240621T203000
DTSTAMP:20261010T034040
CREATED:20240525T123253Z
LAST-MODIFIED:20240525T123253Z
UID:17824-1718991000-1719001800@www.als-mnd.org
SUMMARY:Webinar from The MND Association of South Africa and Genoa Underwriting Managers
DESCRIPTION:DAY 3 | LAW AND ETHICS | Ethics\nAUDIENCE | Everyone \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-3/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240620T130000
DTEND;TZID=America/Toronto:20240620T140000
DTSTAMP:20261010T034040
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:20240619T173000
DTEND;TZID=America/Toronto:20240619T203000
DTSTAMP:20261010T034040
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:20240530T190000
DTEND;TZID=America/Toronto:20240530T190000
DTSTAMP:20261010T034040
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:20240415T130000
DTEND;TZID=America/Toronto:20240415T140000
DTSTAMP:20261010T034040
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:20240318T163000
DTEND;TZID=America/Toronto:20240318T173000
DTSTAMP:20261010T034040
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/North_Dakota/New_Salem:20231215T120000
DTEND;TZID=America/North_Dakota/New_Salem:20231215T130000
DTSTAMP:20261010T034040
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/North_Dakota/Beulah:20231204T120000
DTEND;TZID=America/North_Dakota/Beulah:20231204T130000
DTSTAMP:20261010T034040
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=Europe/London:20231128T110000
DTEND;TZID=Europe/London:20231128T123000
DTSTAMP:20261010T034040
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;TZID=Europe/London:20231122T123000
DTEND;TZID=Europe/London:20231122T130000
DTSTAMP:20261010T034040
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=America/North_Dakota/Center:20231026T120000
DTEND;TZID=America/North_Dakota/Center:20231026T130000
DTSTAMP:20261010T034040
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:20231011T130000
DTEND;TZID=America/Detroit:20231011T150000
DTSTAMP:20261010T034040
CREATED:20231010T103756Z
LAST-MODIFIED:20231010T103756Z
UID:16692-1697029200-1697036400@www.als-mnd.org
SUMMARY:Webinar from ALS Canada: Navigating Mental Health & ALS
DESCRIPTION:An individual’s mental health and how they are supported is important when facing an ALS diagnosis. On October 11\, please join presenters from Sunnybrook ALS Clinic and Hospice Niagara\, who will provide in-depth information about the importance of emotional health\, conversations about anticipatory grief\, and how individuals\, family\, and friends can access mental health resources in their community.
URL:https://www.als-mnd.org/event/webinar-from-als-canada-navigating-mental-health-als/
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230926T133000
DTEND;TZID=America/Detroit:20230926T150000
DTSTAMP:20261010T034040
CREATED:20230929T165654Z
LAST-MODIFIED:20230929T165654Z
UID:16647-1695735000-1695740400@www.als-mnd.org
SUMMARY:Webinar from ALS Quebec- Professional Panel
DESCRIPTION:Have you ever wondered who all these healthcare professionals are and how they take care of you? So join us for this presentation of the professional panel. We have set up four panels\, three in French and one in English\, where health professionals from ALS clinics\, CLSCs and rehabilitation centers will explain their profession and their role in your care. \n\n\nThis webinar is in French. \n\n\n\nWhen: Tuesday September 26\, 2023\, from 1:30 p.m. to 3 p.m.\n\n\n\n\nWhere: The webinar takes place on Zoom\n\n\n\n\n\n\n\nREGISTER\n\n\n\n\n\n\nIf you are not familiar with the Zoom platform\, or with online communications\, do not hesitate to consult our Zoom user guides on  our website. \n\n\nFor more information\, contact Kate Busch at 514 725-2653\, ext. 109 | 1-877-725-7725 or by email at  kbusch@sla-quebec.ca
URL:https://www.als-mnd.org/event/webinar-from-als-quebec-professional-panel/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Detroit:20230926T103000
DTEND;TZID=America/Detroit:20230926T120000
DTSTAMP:20261010T034040
CREATED:20230929T165738Z
LAST-MODIFIED:20230929T165738Z
UID:16645-1695724200-1695729600@www.als-mnd.org
SUMMARY:Webinar from ALS Quebec- Professional Panel
DESCRIPTION:Have you ever wondered who all these healthcare professionals are and how they take care of you? So join us for this presentation of the professional panel. We have set up four panels\, three in French and one in English\, where health professionals from ALS clinics\, CLSCs and rehabilitation centers will explain their profession and their role in your care. \n\nThis webinar is in French. \n\n\n\nWhen: Tuesday September 26\, 2023\, from 10:30 a.m. to 12 p.m.\n\n\n\n\nWhere: The webinar takes place on Zoom\n\n\n\n\n\n\n\nREGISTER\n\n\n\n\n\n\nIf you are not familiar with the Zoom platform\, or with online communications\, do not hesitate to consult our Zoom user guides on  our website. \n\n\nFor more information\, contact Kate Busch at 514 725-2653\, ext. 109 | 1-877-725-7725 or by email at  kbusch@sla-quebec.ca
URL:https://www.als-mnd.org/event/webinar-from-als-quebec-professional-panel-2/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230912T133000
DTEND;TZID=America/New_York:20230912T150000
DTSTAMP:20261010T034040
CREATED:20230911T151535Z
LAST-MODIFIED:20230913T140218Z
UID:16560-1694525400-1694530800@www.als-mnd.org
SUMMARY:Webinar from ALS Quebec - Professional Panel
DESCRIPTION:Have you ever wondered who all these health care professionals are and how they are caring for you? Then please join us for this Professional Panel presentation. We have four panels set up\, three in French and one in English\, where healthcare professionals from ALS clinics\, CLSC\, and rehabilitation centres will explain their profession and their role within your care. \n\n\nThis webinar session is in English.
URL:https://www.als-mnd.org/event/professional-panel/
LOCATION:Online
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.als-mnd.org/wp-content/uploads/2023/09/ALSQuebec.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/New_York:20230912T103000
DTEND;TZID=America/New_York:20230912T120000
DTSTAMP:20261010T034040
CREATED:20230911T151547Z
LAST-MODIFIED:20230913T140249Z
UID:16564-1694514600-1694520000@www.als-mnd.org
SUMMARY:Webinaire de la SLA Québec - Panel professionnel
DESCRIPTION:Vous êtes-vous déjà demandé qui sont tous ces professionnels de la santé et comment ils prennent soin de vous ? Alors rejoignez-nous pour cette présentation du panel professionnel. Nous avons mis en place quatre panels\, trois en français et un en anglais\, où des professionnels de la santé des cliniques de la SLA\, des CLSC et des centres de réadaptation vous expliqueront leur métier et leur rôle au sein de votre prise en charge. \n\n\nCe webinaire est en français.
URL:https://www.als-mnd.org/event/panel-professionnel/
LOCATION:Online
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/png:https://www.als-mnd.org/wp-content/uploads/2023/09/SLAQuebec.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230817T200000
DTEND;TZID=Europe/London:20230817T210000
DTSTAMP:20261010T034040
CREATED:20230814T185111Z
LAST-MODIFIED:20230913T140314Z
UID:16536-1692302400-1692306000@www.als-mnd.org
SUMMARY:Webinar from the Les Turner ALS Foundation - Compassionate Communities for ALS/MND: Supporting those Caring\, Dying and Grieving
DESCRIPTION:In this Learning Series webinar\, Professor Samar Aoun will share key findings and advice on enabling social networks to support people living with ALS/MND\, making palliative care more widely accessible. A particular focus will be on bereavement support and family caregiver support. \n\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. \n\nAbout the Speaker: Professor Aoun is a Perron Institute Research Chair in Palliative Care at The University of Western Australia\, in addition to\, the Chair of MND Australia\, and the MND Association in Western Australia. She is a global leader in the areas of public health palliative care and compassionate communities research and has influenced rapid system change and informed practice and policy at the national and international levels. Among numerous awards\, Professor Aoun received the Medal for Excellence from the European Society for Person Centered Healthcare in 2018\, the Centenary Medal in 2003 from Australia’s Prime Minister and more recently 2023 Western Australia’s Australian of the Year.
URL:https://www.als-mnd.org/event/compassionate-communities-for-als-mnd-supporting-those-caring-dying-and-grieving/
LOCATION:Online
CATEGORIES:Webinar
ATTACH;FMTTYPE=image/jpeg:https://www.als-mnd.org/wp-content/uploads/2023/08/Aug17.jpg
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20230517T070000
DTEND;TZID=Europe/London:20230517T080000
DTSTAMP:20261010T034040
CREATED:20230525T054504Z
LAST-MODIFIED:20230523T052923Z
UID:15960-1684306800-1684310400@www.als-mnd.org
SUMMARY:WEBINAR: Maintaining my independence
DESCRIPTION:A panel with occupational therapists in ALS/MND providing recommendations for PALS at different stages of their journey. Tips\, considerations\, and what can be done at home.
URL:https://www.als-mnd.org/event/webinar-clinical-trials-in-genetics-for-sporadic-als-mnd/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
END:VCALENDAR