Mental Health Support for People Living with ALS/MND and Caregivers
September 27 @8:00 AM (EST)
Join us in this webinar where our expert panel delves into the emotional impact experienced by people with ALS/MND, caregivers, young adults, and children. We will look at the challenges of coping with the progressive changes ALS/MND brings, processing loss, and other key considerations to maintain mental health.
Prof. Melinda Kavanaugh – Global Neuro YCare
Dr. John Ashworth – North Bristol NKS Trust
Moderated by: Marcela Santos – Colombian ALS/MND Association (ACELA)
Annual Global Clinical Trials Update
November 2 @7:00 AM (EST)
This webinar will provide information on ALS/MND treatments currently in Phase 3 Clinical Trials. We will hear directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed.
Webinar Recordings
2023
Global Fundamental Rights Survey Results
The International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised, the topics that require further attention, and how these compared to our 2021 survey.
Scientific Advisory Council update & Q&A
*English and Spanish captions available.
Join us for the mid-year update from the Scientific Advisory Council.
Dr. Nicholas Cole – MND Association
Dr. Kuldip Dave – The ALS Association
Dr. Nadia Sethi – ALS Therapy Development Institute
Dr. David Taylor – ALS Canada
Moderated by: Dr. Gethin Thomas – MND Australia
Maintaining my independence
*English and Spanish captions available.
Watch our webinar with occupational therapist Sarah Solomon and Gudjon Sigurdsson, a person living with ALS/MND. They provide recommendations on how to maintain independence when living with this diagnosis. Moderated by Sara Feldman.
Genetic Counselling and Testing
*English and Spanish captions available.
Familial or sporadic ALS/MND, the importance of genetic counselling and testing can´t be emphasized enough. Join us for this scenario-based discussion which will look at real situations ranging from an ALS/MND asymptomatic carrier to someone whose parent had ALS/MND, but has not done genetic testing.
Sharing Success: A Fireside Chat with the 2022 Award Winners
An informal conversation with the 2022 Award winners on their careers and their contributions to the field of ALS/MND. Panelists include Sally Light (Humanitarian Award recipient), Dr. Richard Bedlack (Forbes Norris Award recipient), and Richard Cave (Allied Health Professional Award recipient).
*English and Spanish captions available.
What Do I Need to Know About Clinical Trials?
Learn about the importance of clinical trials, how to find a suitable clinical trial, and what to consider if you want to take part and next steps. Moderated by Rachael Marsden. Panelists include Allison Bulat, Nadia Sethi & Paula Trefiak.
*English and Spanish captions available.
2022
FIRST ANNUAL GLOBAL CLINICAL TRIALS UPDATE This webinar provides information on ALS/MND treatments currently in Phase 3 Clinical Trials. We heard directly about timelines, where the sites are, other programs offered, and who to contact if more information is needed. Moderated by Gethin Thomas, Executive Director, Research – MND Australia, and Dr. Thanuja Dharmadasa, Senior Clinical Research Fellow at The Royal Melbourne Hospital and The Florey Institute of Neuroscience and Mental Health in Victoria, Australia. Enjoy presentations from AB Science, Amylyx, Biogen, Clene Nanomedicine, Cytokinetics, Ferrer, Ionis, and Mitsubishi Tanabe Pharma!
GENETIC COUNSELLING Join us in learning more about genetic counselling in ALS/MND. Genetic counsellor Ashley Crook will be providing us with an overview of genetic counselling, different types of genetic testing, and genetic counselling considerations before testing.
VOICE BANKING In this webinar we will learn more about the new assistive technology of voice banking. . We will cover basic concepts, how it is done, timing, considerations and limitations. Moderator: Sara Feldman – ALS Hope Foundation. Panel: Alicia Gibb – MND New South Wales, Monique Signorelli – Motor Neurone Disease (MND) Clinic – Communication and Assistive Technology (CAT) Clinic, Emily Kornman – Team Gleason, and Norman MacIsaac -PALS Perspective.
INNOVATION IN CLINICAL TRIAL DESIGN Clinical trial design is evolving in the ALS/MND community. This webinar updates us on what the new models are, how they are changing the landscape and what are the practical implications for our community. Moderators: Gethin Thomas – Executive Director, Research | Motor Neurone Disease Australia & Claire Magnussen, PhD – Program Manager | CAPTURE ALS, McGill University. Panel: Dr. Merit Cudkowicz – HEALEY Trial, Dr. Ruben van Eijk – MAGNET Trial, Dr Suvankar Pal & Professor Siddharthan Chandran – SMART Trial.
APP DEMONSTRATION We demonstrate applications that can help people living with ALS/MND with their communication. Panel includes: Alper Kaya (Co-Chair of the Turkish ALS/MND Association & Person living with ALS/MND and Richard Cave (Speech and Language Therapist & Project Manager for MND Association).
SCIENTIFIC ADVISORY COUNCIL UPDATE & Q&A Mid-year update from the Alliance’s Scientific Advisory Council.
CARE PART 3: END OF LIFE This is not an easy topic, but one that is important to discuss. In this webinar we provided guidance on how PALS and CALS can address this stage of their journey, and what to look for in support and planning resources.
CARE PART 2: WHAT ARE MY ONGOING NEEDS WITH ALS/MND? This webinar addressed the questions: As ALS/MND progresses what are the ongoing needs of both people living with ALS/MND and their caregivers? And, how can those needs best be met? Moderated by Nick Goldup, Director of Care Improvement at MNDA UK.
CARE PART 1: WHAT DO I NEED TO KNOW AT DIAGNOSIS? In this webinar we explored the steps and actions people living with ALS/MND and their caregivers should consider at diagnosis to move forward in their ALS/MND journey.
GLOBAL SURVEY RESULTS The International Alliance of ALS/MND Associations surveyed the community about the Fundamental Rights of People living with ALS/MND and Caregivers. Learn more about the data, strengths and weaknesses at a global level, the questions raised and the topics that require further attention.
SHARING SUCCESS: A FIRESIDE CHAT WITH THE 2021 AWARD WINNERS An informal conversation with the 2021 Award winners on their careers, and their contributions to the field of ALS/MND.
2021
ETHICAL CONSIDERATIONS FOR GENETICS A discussion of the risks and benefits of genetic testing in individuals who are symptomatic or have a family history of ALS. Different contexts and potential considerations for individuals who are symptomatic for ALS, with and without a family history of ALS, or those who are asymptomatic for ALS but considering undergoing genetic testing will be discussed
GENETICS – COUNSELLING & TESTING This webinar touches on; what is genetic counselling and role of a genetic counsellor, what is involved in genetics counselling & testing, availability, awareness of ethical issues surrounding genetic testing, psychological effects of genetic testing and tackling difficult concepts in ALS/MND clinical genetics. Click here for information on our Moderators & Presenters.
INTRODUCTION TO ALS/MND GENETICS This webinar provides an overview of the current ALS/MND landscape and an understanding of genetics, so that people impacted by ALS/MND and their families have the basic tools to understand what this means and their options. Click here for information on our Moderators & Presenters.
OPTIMIZING CLINICAL TRIAL DESIGN From outcome measures to entry criteria, this webinar explores the lessons we have learned from the failed trials of the past, and how those have been integrated in to our optimization of clinical trials of the future.
YOUTH AND ALS/MND This webinar discusses the experience of a child whose parent has ALS/MND, and communication with a child to address their concerns and questions.
INNOVATION AND TECHNOLOGY IN ALS/MND This webinar explores several student projects that were part of the ‘Accessibility and Assistive Technologies’ module at University College London. Each project focused on the design of technologies for people living with ALS/MND that helps bridge the gap between the capabilities of the person and those required to conduct a task. “Until there is a cure, technology is the cure”.
BIOMARKERS IN ALS/MND This webinar provides an overview of biomarkers emerging as the front runners for the field, and how a combinatorial approach will likely be needed.
TELEMEDICINE BEST PRACTICES IN CARE & RESEARCH This webinar discusses best practices in telemedicine, for both care and research, for patients living with ALS/MND.
Q&A WITH THE ALLIANCE’S SCIENTIFIC ADVISORY COUNCIL A mid-year update of the Alliance’s Scientific Advisory Council in honour of Global ALS/MND Awareness Day.