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X-WR-CALDESC:Events for International Alliance of ALS/MND Associations
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DTSTART:20240310T070000
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DTSTART;TZID=America/Toronto:20240403T150000
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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
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DTSTART;TZID=America/Toronto:20240415T130000
DTEND;TZID=America/Toronto:20240415T140000
DTSTAMP:20261013T065150
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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
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DTSTART;TZID=America/Toronto:20240424T090000
DTEND;TZID=America/Toronto:20240424T100000
DTSTAMP:20261013T065150
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
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