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BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240327T080000
DTEND;TZID=America/Toronto:20240327T090000
DTSTAMP:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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:20260928T214640
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
BEGIN:VEVENT
DTSTART;VALUE=DATE:20240621
DTEND;VALUE=DATE:20240622
DTSTAMP:20260928T214640
CREATED:20240125T200943Z
LAST-MODIFIED:20240125T200943Z
UID:16886-1718928000-1719014399@www.als-mnd.org
SUMMARY:Global Day
DESCRIPTION:Every year the International Alliance of ALS/MND Associations celebrates 21 June as the global day of recognition of ALS/MND – a disease that affects people in every country of the globe. \nALS/MND  is a global problem. It does not discriminate on the basis of race\, ethnicity\, socioeconomic status or region. There are people living with ALS/MND all over the world. For every person diagnosed\, the impact of the disease will be forever felt by their loved ones. \nAlliance members across the world use the hashtag #ALSMNDWithoutBorders on June 21 to raise awareness and funds on Global Day. \nWhy June 21?\nJune 21 is a solstice – a turning point – and each year the ALS/MND community undertake a range of activities to express their hope that this day will be another turning point in the search for cause\, treatment and cure of ALS/MND. \nJoin the fight… Spread the word\nGlobal Day is an event that knows no boundaries\, so everybody can be involved. Any event (big or small)\, any activity\, any act\, can be a part of raising awareness of ALS/MND. \nWays to spread the word: \nUse the hashtag #ALSMNDWithoutBorders to share information and education about ALS/MND on social media! \nCelebrate international partnerships and collaborations that make us united in the worldwide fight against ALS/MND. \nShow your support for the Fundamental Rights of people living with ALS/MND by reading and sharing this advocacy tool. \nHold a fundraiser for your local ALS/MND association.
URL:https://www.als-mnd.org/event/global-day/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240621T100000
DTEND;TZID=America/Toronto:20240621T110000
DTSTAMP:20260928T214640
CREATED:20240410T202044Z
LAST-MODIFIED:20240410T202044Z
UID:17695-1718964000-1718967600@www.als-mnd.org
SUMMARY:Webinar from Alliance: Global Awareness Day
DESCRIPTION:On June 21\, ALS/MND Global Awareness Day\, we’ll be holding a public webinar\, moderated by our Chair\, Calaneet Balas\, to raise the profile of ALS/MND through the impact of the Ice Bucket Challenge. We’ll share the history of research and treatment developments over the past 10 years and how the Challenge helped on a global scale. We’ll be inviting the families of the three founders of the challenge to share their memories\, as well as organizations that have used the challenge in their activities. And\, of course\, we will be debuting our member Ice Bucket Challenge video.
URL:https://www.als-mnd.org/event/webinar-from-alliance-global-awareness-day/
LOCATION:Zoom Webinar
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240621T173000
DTEND;TZID=America/Toronto:20240621T203000
DTSTAMP:20260928T214640
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:20240725T130000
DTEND;TZID=America/Toronto:20240725T130000
DTSTAMP:20260928T214640
CREATED:20240624T163042Z
LAST-MODIFIED:20240624T163042Z
UID:17868-1721912400-1721912400@www.als-mnd.org
SUMMARY:Webinar from Les Turner ALS Foundation: The RISE Initiative:  Clinical Research\, Inclusion\, Support\, and Education
DESCRIPTION:Title: The RISE Initiative: Clinical Research\, Inclusion\, Support\, and Education \nLink to register: https://us02web.zoom.us/webinar/register/WN_boRKwZHESzCc9X_KjWrY0A#/registration \nJoin us for our July ALS Learning Series where Allison Bulat will discuss the Research Inclusion Support and Education (RISE) Initiative of The Northeast ALS Consortium (NEALS). This important initiative includes programs like the Clinical Research Learning Institute (CRLI) Research Ambassador Program\, opportunities for people to engage with researchers\, and personalized support for navigating the ALS clinical research landscape\, and so much more. Allison will discuss all the programs under the initiative and answer any questions you may have. \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  \nAllison graduated from Ottawa University with a BA degree in Human Resource Management/Organizational Development. In addition\, she completed her graduate-level certification in Clinical Research Management from UC Berkeley in December of 2019\, and is currently in the process of obtaining a certification in “Partnering with Patients and the Public in Co-Production of Research” from Stanford University. \nAllison lost her husband to ALS in 2016 and has since committed her time and energy to helping others with ALS. She is currently a certified NEALS ALS Research Ambassador\, the Co-Chair of the NEALS Patient Education and Advocacy Committee\, the co-chair of the NEALS Information & Education Workgroup\, the Community Engagement Lead for both NEALS\, and the Sean M. Healey and AMG Center for ALS at MGH\,  a member of the Patient Advisory Committee\, Retention and Recruitment Committee\, and Regimen A Steering Committee for the HEALEY ALS Platform Trial\, the Chair of the Patient Advisory Board for the ALS Natural History Consortium\, a member of multiple strategic planning groups for the NIH/NINDS\, and works with the International Alliance of ALS/MND Associations.
URL:https://www.als-mnd.org/event/webinar-from-les-turner-als-foundation-the-rise-initiative-clinical-research-inclusion-support-and-education/
LOCATION:Zoom 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:20260928T214640
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:20260928T214640
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:20260928T214640
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;VALUE=DATE:20240927
DTEND;VALUE=DATE:20240928
DTSTAMP:20260928T214640
CREATED:20240927T104026Z
LAST-MODIFIED:20240927T104117Z
UID:18022-1727395200-1727481599@www.als-mnd.org
SUMMARY:ALS Caregiver Training Course from conSLAncio (in-person)
DESCRIPTION:Free ALS Caregiver Training Course\, for at-home carers and health professionals\, (in-person) in San Cataldo\, Italy on Oct 7\, 2024.\n \nPlease see the graphic below for details.\n 
URL:https://www.als-mnd.org/event/free-als-caregiver-training-course-from-conslancio-in-person/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20240930T160000
DTEND;TZID=America/Toronto:20240930T170000
DTSTAMP:20260928T214640
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=Europe/Rome:20241009T140000
DTEND;TZID=Europe/Rome:20241009T190000
DTSTAMP:20260928T214640
CREATED:20240927T104741Z
LAST-MODIFIED:20240927T104741Z
UID:18026-1728482400-1728500400@www.als-mnd.org
SUMMARY:Event from conSLAncio: 2nd annual Italian Patient-Industry Networking Event
DESCRIPTION:2nd annual Italian Patient-Industry Networking Event with our partners\, Oct 9th\, in Milano\, Italy.\n \nFree registration.\n \nIt will focus on the necessary psychological support for persons living with disease.\n \nPlease see link below:\nhttps://www.conslancio.it/2024/07/22/accompagnare-sempre-il-bisogno-del-sostegno-psicologico-nella-malattiamilano/
URL:https://www.als-mnd.org/event/event-from-conslancio-2nd-annual-italian-patient-industry-networking-event/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20241031T130000
DTEND;TZID=America/Toronto:20241031T140000
DTSTAMP:20260928T214640
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:20260928T214640
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;VALUE=DATE:20241108
DTEND;VALUE=DATE:20241110
DTSTAMP:20260928T214640
CREATED:20240927T105231Z
LAST-MODIFIED:20240927T105525Z
UID:18028-1731024000-1731196799@www.als-mnd.org
SUMMARY:Workshop from conSLAncio : Motor Neuron Diseases III Edition: Understanding the Pathogenetic Mechanisms to Develop Therapies
DESCRIPTION:The workshop will focus on motor neuron diseases\, in particular ALS and SMA. This hybrid meeting will elucidate biological mechanisms involved in muscular atrophy (at different ages and conditions) and describe therapeutic strategies for these disorders.\n \nFor whom may be interested\, a social dinner (40€) is planned on 8th November: it will be a great occasion to meet the speakers and do networking.\n \nVENUES\nPalace of the Anatomical Institutes\, C.so Massimo D’Azeglio 52\, 10124\, Torino\, Italy\n \nPRACTICAL ACTIVITY:\nWe will discover image analysis software\, to analyze the morphology and innervation of neuromuscular junctions. If necessary\, materials will be provided to practice on site on the own laptop.\n \nREGISTRATION FEES:\n– In person attendance (including lectures\, possibility to present a poster/oral presentation\, practical activities\, coffee breaks\, light lunch AND social dinner): 130 €\n– In person attendance (including lectures\, possibility to present a poster/oral presentation\, practical activities\, coffee breaks/light lunch\, NO social dinner): 90 €\n– Online attendance (including lectures): 60 €\n\n 
URL:https://www.als-mnd.org/event/workshop-from-conslancio-motor-neuron-diseases-iii-edition-understanding-the-pathogenetic-mechanisms-to-develop-therapies/
LOCATION:Palace of the Anatomical Institutes\, Italy
CATEGORIES:Conference
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20241114T110000
DTEND;TZID=America/Toronto:20241114T120000
DTSTAMP:20260928T214640
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;VALUE=DATE:20241202
DTEND;VALUE=DATE:20241204
DTSTAMP:20260928T214640
CREATED:20240125T201020Z
LAST-MODIFIED:20240125T201020Z
UID:16880-1733097600-1733270399@www.als-mnd.org
SUMMARY:2024 Alliance Meeting
DESCRIPTION:The 2024 Alliance Meeting will be attended by 100+ delegates in-person and 100+ delegates virtually from over 40 countries around the globe that represent the Alliance’s many member associations. The meeting provides an opportunity for member associations to meet and share advances in supporting people living with ALS/MND. It is an excellent opportunity for representatives of ALS/MND associations to discuss organizational development and planning\, regulation\, advocacy\, patient care\, research and funding. 
URL:https://www.als-mnd.org/event/2024-alliance-meeting/
ATTACH;FMTTYPE=image/jpeg:https://www.als-mnd.org/wp-content/uploads/2024/01/meeting-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241204
DTEND;VALUE=DATE:20241206
DTSTAMP:20260928T214640
CREATED:20240125T201038Z
LAST-MODIFIED:20240125T201038Z
UID:16883-1733270400-1733443199@www.als-mnd.org
SUMMARY:2024 Allied Professionals Forum
DESCRIPTION:The Allied Professionals Forum (APF) includes clinical care presentations for ALS/MND health and social care professionals. During the APF\, practitioners from around the globe come together to share their practical knowledge and experiences\, with a mission to improve the quality of care for people living with ALS/MND worldwide. On average\, we expect 200 professionals to attend this forum in person and another 200+ virtually.
URL:https://www.als-mnd.org/event/2024-allied-professionals-forum/
ATTACH;FMTTYPE=image/jpeg:https://www.als-mnd.org/wp-content/uploads/2024/01/meeting-1-scaled.jpeg
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20241206
DTEND;VALUE=DATE:20241209
DTSTAMP:20260928T214640
CREATED:20240125T201056Z
LAST-MODIFIED:20240125T201056Z
UID:16888-1733443200-1733702399@www.als-mnd.org
SUMMARY:35th International Symposium on ALS/MND
DESCRIPTION:The International Symposium is the biggest annual conference dedicated to ALS and MND research. Each year we bring together researchers from around the world to share new understanding of amyotrophic lateral sclerosis and motor neurone disease. \nThis year’s event will take place in Montreal\, Canada on 6-8 December 2024.
URL:https://www.als-mnd.org/event/35th-international-symposium-on-als-mnd/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=America/Toronto:20250115T130000
DTEND;TZID=America/Toronto:20250115T140000
DTSTAMP:20260928T214640
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:20260928T214640
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:20260928T214640
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
END:VCALENDAR