Alliance Webinars

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2024 Recordings

ANNUAL CLINICAL TRIALS UPDATE – This webinar provides information on ALS/MND treatments currently in Phase 3 clinical trials. We hear directly about timelines, where the sites are, other programs offered and whom to contact if more information is needed.

GLOBAL ALS/MND AWARENESS DAY – In honour of Global Day, we explore the impact of the Ice Bucket Challenge, how it raised the profile of the ALS/MND and led to significant advancements in care, advocacy and research. You hear from Nancy Frates, mother of Pete Frates, one of the individuals credited with starting the Ice Bucket Challenge, as well as member organizations about the impacts they’ve seen both locally and globally. Also, see the debut of our member Ice Bucket Challenge video, showcasing members participating in the challenge around the world to spread HOPE to every corner!

RESPIRATORY SUPPORT IN ALS/MND – This webinar covers the essentials to understand respiratory support in ALS/MND. We look at how breathing is affected, what care and support can be followed, non-invasive equipment available, as well as what is a tracheostomy, how it works, and considerations.

MENTAL HEALTH IN ALS/MND – This webinar provides tools and recommendations for people living with ALS/MND, their caregivers and youth. We 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.

ALS/MND PLATFORM TRIALS UPDATE – This webinar provides information on ALS/MND platform trials. We hear from HEALEY, MAGNET and SMART representatives who update us on their approach, recruitment, trial eligibility and their latest news.

NUTRITION IN ALS/MND – This webinar provides an understanding of the importance of nutrition in ALS/MND. We address nutritional changes upon diagnosis, considerations for bulbar onset ALS/MND, and the myths and benefits of feeding tubes.

ANNUAL GLOBAL CLINICAL TRIALS UPDATE – This webinar provides information on ALS/MND treatments currently in Clinical Trials. We hear directly about timelines, where the sites are, other programs offered and who to contact if more information is needed.

2023 Recordings

MENTAL HEALTH SUPPORT FOR PEOPLE LIVING WITH ALS/MND and CAREGIVERS– 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, Albert Koo – Malaysia. Moderated by: Marcela Santos – Colombian ALS/MND Association (ACELA)

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 – 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 – 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 COUNSELING AND TESTING – 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 Recordings

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.

2021 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 Recordings

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.