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DTSTART;TZID=America/Toronto:20240415T130000
DTEND;TZID=America/Toronto:20240415T140000
DTSTAMP:20260928T173443
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:20240530T190000
DTEND;TZID=America/Toronto:20240530T190000
DTSTAMP:20260928T173443
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:20260928T173443
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:20260928T173443
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:20240621T173000
DTEND;TZID=America/Toronto:20240621T203000
DTSTAMP:20260928T173443
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:20240829T130000
DTEND;TZID=America/Toronto:20240829T140000
DTSTAMP:20260928T173443
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:20240915T130000
DTEND;TZID=America/Toronto:20240915T140000
DTSTAMP:20260928T173443
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:20240925T130000
DTEND;TZID=America/Toronto:20240925T140000
DTSTAMP:20260928T173443
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:20240930T160000
DTEND;TZID=America/Toronto:20240930T170000
DTSTAMP:20260928T173443
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:20241031T130000
DTEND;TZID=America/Toronto:20241031T140000
DTSTAMP:20260928T173443
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:20241106T070000
DTEND;TZID=America/Toronto:20241106T080000
DTSTAMP:20260928T173443
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:20241114T110000
DTEND;TZID=America/Toronto:20241114T120000
DTSTAMP:20260928T173443
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:20250115T130000
DTEND;TZID=America/Toronto:20250115T140000
DTSTAMP:20260928T173443
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:20250206T130000
DTEND;TZID=America/Toronto:20250206T140000
DTSTAMP:20260928T173443
CREATED:20250120T131118Z
LAST-MODIFIED:20250120T131155Z
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:20250210T153000
DTEND;TZID=America/Toronto:20250210T163000
DTSTAMP:20260928T173443
CREATED:20250203T194937Z
LAST-MODIFIED:20250203T194937Z
UID:18265-1739201400-1739205000@www.als-mnd.org
SUMMARY:Webinar from NEALS: Understanding the Customer Experience Journey in ALS Clinical Trials Across North America
DESCRIPTION:In 2016\, a “secret shopper” initiative was launched to assess the responsiveness of ALS clinical trial sites to patient inquiries. The findings revealed significant challenges in both the quality and quantity of responses\, highlighting areas needing improvement. \nThis webinar revisits the study in 2024 to evaluate current site responsiveness compared to the 2016 baseline. We will explore whether fundamental customer service principles can enhance patient engagement and participation in ALS clinical trials. \nRegister now.
URL:https://www.als-mnd.org/event/webinar-from-neals-understanding-the-customer-experience-journey-in-als-clinical-trials-across-north-america/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250319T080000
DTEND;TZID=America/Toronto:20250319T090000
DTSTAMP:20260928T173443
CREATED:20250220T162114Z
LAST-MODIFIED:20250220T162114Z
UID:18273-1742371200-1742374800@www.als-mnd.org
SUMMARY:Webinar from the International Alliance: ALS/MND Platform Trials Update
DESCRIPTION:ALS/MND PLATFORM TRIALS UPDATE\n \n19 March 8 am ET\nRegistration: https://us02web.zoom.us/webinar/register/WN_GEOgomftSVOcV0woGWug4g#/registration\nWe will have captions available\n \nThis webinar will provide information on ALS/MND platform trials. We will hear from HEALEY\, EXPERTS ALS and SMART. They will update us on their approach\, recruitment\, trial eligibility and their latest news.
URL:https://www.als-mnd.org/event/webinar-from-the-international-alliance-als-mnd-platform-trials-update/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250331T130000
DTEND;TZID=America/Toronto:20250331T140000
DTSTAMP:20260928T173443
CREATED:20250303T131846Z
LAST-MODIFIED:20250303T131846Z
UID:18299-1743426000-1743429600@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Observational Studies Help in the Quest for Effective ALS Therapies
DESCRIPTION:About the Program \nIn this talk Dr. Berry will discuss the aims\, design considerations\, and implementation of observational studies\, highlighting the many ways observational studies hastened drug development and can create resources that aid the ALS community in the present and for years to come. \nAbout the Speaker \nDr. Berry leads the Massachusetts General Hospital Division of ALS and Motor Neuron Diseases. He is an active clinician and ALS clinical researcher\, with a focus on biomarker development and ALS clinical trial methodology. He oversees a large biorepository\, collecting\, storing and sharing blood\, DNA\, and spinal fluid and accompanying patient information\, which allows researchers around the globe to conduct critical research identifying biomarkers of ALS and developing novel therapeutics. He also leads projects developing digital endpoints for ALS trials that will help increase the objective data for trials while decreasing the burden on trial participants. Finally\, he is deeply committed to developing novel therapeutics by translating discoveries in the lab into clinical trials and leading clinical trials that will transform our approach to care in ALS. \nDr. Berry also oversees and leads out the clinic at the Healey Center for ALS\, caring for patients and helping to build and lead the multidisciplinary care team. He helped found the Telemedicine for People with ALS (TelePALS) program\, the ALS House Call Program and the Parenting at a Challenging Time (PACT) programs within the 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\, & Biogen for sponsoring this webinar. \nLink to register
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-observational-studies-help-in-the-quest-for-effective-als-therapies/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250424T130000
DTEND;TZID=America/Toronto:20250424T140000
DTSTAMP:20260928T173443
CREATED:20250404T142616Z
LAST-MODIFIED:20250404T142643Z
UID:18355-1745499600-1745503200@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: The ALS Exposome: How Environmental Exposures Inform Disease Risk and Prevention
DESCRIPTION:About the Program\nJoin us for our April ALS Learning Series with Dr. Goutman\, neurologist\, from University of Michigan. Dr. Goutman will discuss research related to how environmental exposures influence ALS. A Q&A will follow. \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation\, Mitsubishi Tanabe Pharma America\, & Biogen for sponsoring this webinar. \nAbout the Speaker\nStephen Goutman\, MD\, MS\, FAAN is the Harriet Hiller Research Professor\, an Associate Professor in the Department of Neurology\, Director of the Pranger Amyotrophic Lateral Sclerosis Clinic\, and Associate Director of the ALS Center of Excellence at Michigan Medicine. After obtaining a degree in neuroscience at the Johns Hopkins University\, Dr. Goutman completed his medical degree at the University of Chicago Pritzker School of Medicine and his neurology residency and neuromuscular fellowship at Cleveland Clinic. He received a Master’s in Clinical Research Design and Statistical Analysis at the University of Michigan. \nInspired by his patients\, Dr. Goutman’s research focuses on identifying new mechanisms and therapies for ALS. Specifically\, he has been seeking to understand the genetic and environmental interactions that alter susceptibility to ALS\, especially in the State of Michigan\, which has some of the highest rates of ALS in the country. With funding from the National Institutes of Health\, the Centers for Disease Control and Prevention\, and the ALS Association\, he is discovering environmental risk factors associated with the onset and progression of ALS by collecting epidemiologic exposure surveys and biofluids from individuals with and without ALS. He shares an ultimate goal to one day make ALS a preventable disease. \nRegister Now
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-the-als-exposome-how-environmental-exposures-inform-disease-risk-and-prevention/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250522T130000
DTEND;TZID=America/Toronto:20250522T170000
DTSTAMP:20260928T173443
CREATED:20250505T133432Z
LAST-MODIFIED:20250505T133432Z
UID:18480-1747918800-1747933200@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: Tackling the Delay to ALS Diagnosis: How Can We Do Better?
DESCRIPTION:About the Program  \nJoin us for our May ALS Learning Series with Dr. Kelly Gwathmey from Virginia Commonwealth University. She will explore the causes and consequences of ALS diagnostic delay\, along with potential solutions to address this problem. A Q&A will follow. \nThe Les Turner ALS Foundation is proud to offer this webinar at no cost to the ALS community. Thank you to the Gilbert & Jacqueline Fern Foundation & Mitsubishi Tanabe Pharma America for sponsoring this webinar. \nAbout the Speaker  \nKelly Gwathmey is an Associate Professor of Neurology at Virginia Commonwealth University in Richmond\, Virginia. She studied Neuroscience and Behavioral Biology at Emory University in Atlanta\, Georgia. She then attended Eastern Virginia Medical School in Norfolk\, Virginia. Her Neurology and Clinical Neurophysiology training was completed at the University of Virginia. Following this\, she completed a Neuromuscular Medicine fellowship at both Brigham and Women’s Hospital and Massachusetts General Hospital in Boston. At the University of Virginia\, she started the multidisciplinary MDA clinic\, was co-director of the ALS clinic\, and was the fellowship director for both the Neuromuscular and Clinical Neurophysiology fellowships. She joined VCU in January 2019 and currently serves in the capacity of Neuromuscular Division Chair\, Neuromuscular Medicine Program Director and EMG Laboratory Director. Dr. Gwathmey sees a wide spectrum of neuromuscular patients and performs electrodiagnostic studies (nerve conduction studies and electromyography). Her research interests include environmental risk factors in ALS\, diagnostic delay in ALS\, and racial disparities in healthcare.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-tackling-the-delay-to-als-diagnosis-how-can-we-do-better/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250612T170000
DTEND;TZID=America/Chicago:20250612T170000
DTSTAMP:20260928T173443
CREATED:20250521T162310Z
LAST-MODIFIED:20250521T162310Z
UID:18603-1749747600-1749747600@www.als-mnd.org
SUMMARY:Webinar from EUpALS: ‘Supporting your community’s mental wellbeing’
DESCRIPTION:June 12 at 5:00 PM CEST \nRegistration \nThis session will explore how to strengthen the mental and emotional support you offer to the ALS community\, with practical guidance on understanding the different types and levels of support\, making the most of what’s available\, dealing with difficult situations\, and sensitive sign-posting. \nThis is the first part of a 2-part webinars series brought to you by EUpALS and supported by Zambon Biotech. They are designed by ALS patient organization leaders for patient organization leaders. Part 2: ‘Looking after your own mental wellbeing as an ALS community leader’ on July 1.  \nThese interactive webinars will focus on the rewards\, challenges\, and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds (www.rareminds.org)\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-supporting-your-communitys-mental-wellbeing/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250626T160000
DTEND;TZID=America/Toronto:20250626T170000
DTSTAMP:20260928T173443
CREATED:20250523T190621Z
LAST-MODIFIED:20250523T190621Z
UID:18607-1750953600-1750957200@www.als-mnd.org
SUMMARY:Webinar Series from Les Turner ALS Foundation: Healey Center Community Webinars
DESCRIPTION:Date: June 26\, 2025 at 4pm ET (3 CT) \nTitle:  Healey Platform Trial Updates & The Les Turner ALS Foundation \nRegistration link: https://partners.zoom.us/webinar/register/WN_JW9rQBhTRFW5uoUIDtJguw#/registration \nAbout the Program: Join us for our June ALS Learning Series webinar — a collaboration with the Healey Center Community Webinars. Catherine Small\, Patient Navigator for Healey ALS Platform Trial\, will provide updates on current research and the Acceleration Centers of Enrollment (ACE) initiative\, while Anne Marie Doyle\, from the Les Turner ALS Foundation\, will discuss resources available through the Foundation.   \nAbout the Speakers: \nCatherine Small serves as the Patient Navigator for the HEALEY ALS Platform Trial\, working centrally at the Sean M. Healey & AMG Center for ALS at Mass General Hospital while supporting recruitment and enrollment across more than seventy research centers nationwide. In her role as Patient Navigator\, Catherine leads communication efforts to disseminate information about the Platform Trial and acts as an intermediary between people living with ALS\, caregivers\, clinicians\, and study staff to address questions related to trial participation. Catherine leverages her bachelor’s degree in Neuroscience Psychology and previous clinical experience as a psychometrist to bridge conversations between scientists and the ALS community and build patient-centric partnerships in ALS research.  \nAnne Marie Doyle earned a Bachelor’s degree in Communication Sciences & Disorders from Saint Xavier University followed by a Master’s Degree in Speech & Hearing Sciences from the University of Illinois Urbana-Champaign. \nFor 13 years\, she worked as a speech-language pathologist at Shirley Ryan AbilityLab serving both the inpatient and outpatient populations with a specialty in adult neurological conditions\, including working with people living with ALS. She maintains a membership with the American Speech-Language & Hearing Association and participates in their Special Interest Group for Augmentative and Alternative Communication. She has lectured at the state\, national\, and international level\, as well as participated in clinical research.
URL:https://www.als-mnd.org/event/webinar-series-from-les-turner-als-foundation-healey-center-community-webinars/
LOCATION:Online
CATEGORIES:Webinar
ORGANIZER;CN="Les Turner ALS Foundation":MAILTO:info@lesturnerals.org
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Chicago:20250701T170000
DTEND;TZID=America/Chicago:20250701T170000
DTSTAMP:20260928T173443
CREATED:20250521T162618Z
LAST-MODIFIED:20250521T162618Z
UID:18605-1751389200-1751389200@www.als-mnd.org
SUMMARY:Webinar from EUpALS: ‘Looking after your own mental wellbeing as an ALS community leader’
DESCRIPTION:July 1st at 5:00 PM CEST \nRegistration \nThis session focuses inward – on you and your team – offering space to reflect on the emotional demands of leadership and strategies to protect wellbeing\, prevent your own burnout and compassion fatigue\, and how to create a mentally healthy work environment in your organization. \nThis is the second part of a 2-part webinars series brought to you by EUpALS and supported by Zambon Biotech. They are designed by ALS patient organization leaders for patient organization leaders. Part 1: ‘Supporting your community’s mental wellbeing’ on June 12. \nThese interactive webinars will focus on the rewards\, challenges\, and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds (www.rareminds.org)\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-looking-after-your-own-mental-wellbeing-as-an-als-community-leader/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250724T130000
DTEND;TZID=America/Toronto:20250724T140000
DTSTAMP:20260928T173443
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:20260928T173443
CREATED:20250723T183046Z
LAST-MODIFIED:20250724T160756Z
UID:18800-1753794000-1753797600@www.als-mnd.org
SUMMARY:End-of-Life Autonomy – A Conversation on ALS and Medical Aid in Dying
DESCRIPTION:Join us for a thoughtful and informative conversation with Dr. Robin Plumer and Jeremy Boal as we explore the topic of Medical Aid in Dying (MAID). Dr. Plumer will explain what MAID is\, how individuals make the decision to pursue it\, and the compassionate\, patient-centered environments in which it is provided. \nThis webinar will also address the broader context of end-of-life autonomy and the unique considerations for those living with ALS. \nThe session is free and open to all\, and we welcome anyone who may benefit from this conversation. \nZOOM Register Here: https://us06web.zoom.us/webinar/register/WN_cGw2JrVXSbC7bWLXSd0Ifg#/registration
URL:https://www.als-mnd.org/event/end-of-life-autonomy-a-conversation-on-als-and-medical-aid-in-dying/
LOCATION:Online
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251002T170000
DTEND;TZID=Europe/London:20251002T180000
DTSTAMP:20260928T173443
CREATED:20250822T164253Z
LAST-MODIFIED:20250822T164417Z
UID:18822-1759424400-1759428000@www.als-mnd.org
SUMMARY:Webinar from EUpALS: Supporting Your Community’s Mental Wellbeing
DESCRIPTION:Webinar 1: ‘Supporting your community’s mental wellbeing’\nDate: October 2\nTime: 5:00 PM CEST \nThis session will explore how to strengthen the mental and emotional support you offer to the ALS community\, with practical guidance on understanding the different types and levels of support\, making the most of what’s available\, dealing with difficult situations\, and sensitive sign-posting. \nThis is the first of 2 interactive webinars\, which will focus on the rewards\, challenges and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-supporting-your-communitys-mental-wellbeing-2/
LOCATION:Zoom Webinar
CATEGORIES:Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/London:20251009T170000
DTEND;TZID=Europe/London:20251009T180000
DTSTAMP:20260928T173443
CREATED:20250822T164429Z
LAST-MODIFIED:20250822T164429Z
UID:18826-1760029200-1760032800@www.als-mnd.org
SUMMARY:Webinar from EUpALS: Looking After Your Own Mental Wellbeing as an ALS Community Leader
DESCRIPTION:Webinar 2: ‘Looking after your own mental wellbeing as an ALS community leader’\nDate: October 9\nTime: 5:00 PM CEST \nThis session focuses inward – on you and your team – offering space to reflect on the emotional demands of leadership and strategies to protect wellbeing\, prevent your own burnout and compassion fatigue\, and how to create a mentally healthy work environment in your organization. \nThis is the second of 2 interactive webinars\, which will focus on the rewards\, challenges and emotional impact of patient leadership\, and how best to support others whilst still looking after your own mental wellbeing. They will provide you with some practical guidance to help you feel more confident in meeting the emotional needs of people affected by ALS. It will also explore ways you can look after your own emotional wellbeing and that of others who work in your organization. \nWe are delighted that Kym Winter\, a leading psychotherapist with extensive experience in rare diseases\, will lead the webinars. Kym is the Clinical Director and Founder of Rareminds\, a UK based charity providing specialist counselling services and mental wellbeing resources for rare disease communities. \nTo make the webinar series accessible to as many as possible across Europe\, simultaneous translation into French\, German\, Italian and Spanish will be available. \nWhile we recommend attending both sessions\, each is designed as a standalone webinar so you can choose the one most relevant to you or come to both!
URL:https://www.als-mnd.org/event/webinar-from-eupals-looking-after-your-own-mental-wellbeing-as-an-als-community-leader-2/
CATEGORIES:Webinar
END:VEVENT
END:VCALENDAR