Upcoming Webinars
GLOBAL SURVEY RESULTS: FUNDAMENTAL RIGHTS OF PALS AND CALS
October 7, 2021, 7:00 – 8:00 AM ET (New York)
The PALS & CALS Advisory Council of the International Alliance of ALS/MND Associations shares the results and key findings of the global survey on the Fundamental Rights of PALS and CALS. An opportunity to highlight the areas that require further attention and understand strengths and weaknesses at a global and regional level.
Introduction to ALS/MND Genetics
October 14, 2021, 7:00 – 8:00 AM ET (New York)
Recent discoveries are adding significant knowledge to the understanding of genetics in ALS/MND and potential treatments. This webinar will provide you with 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.
GENETICS – COUNSELLING & TESTING
October 28, 2021, 1:00 – 2:00 PM ET (New York)
The Alliance´s Fundamental Rights were updated this year to include the right to have access upon diagnosis to genetic counselling and testing.
There are numerous therapies in development for the genetic forms of ALS/MND. For people living with ALS/MND to be able to access clinical trials, and future potentially approved therapies, access to both genetic counselling and testing will be necessary. This webinar will touch 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
- Tackling difficult concepts in ALS/MND clinical genetics
MENTAL HEALTH SUPPORTS FOR PEOPLE LIVING WITH ALS/MND & CAREGIVERS
November 4, 2021, 7:00 – 8:00 AM ET (New York)
A diagnosis of ALS/MND can generate a range of emotions, for both the patient and their caregivers. Patients can experience anxiety and depression, feel isolated, and often feel like a burden to their loved ones. Caregivers of a loved one with ALS/MND will experience their own set of challenges, including caregiver burnout. This webinar will explore the mental health supports needed and available for people living with ALS/MND, and their caregivers.
Previous Webinars
OPTIMIZING CLINICAL TRIAL DESIGN
The history of clinical trials in ALS/MND has been fraught with failures. It has not been uncommon for a potential therapy to show promise in Phase 2 trial results, then prove to be ineffective in the subsequent, larger-scale Phase 3 trial. Clinical trials take a considerable amount of time, resources, and funding, and as such there have been numerous efforts in the field of ALS/MND to optimize clinical trials to improve their efficiency and effectiveness. 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
A diagnosis of ALS/MND is devastating, not only to the individual receiving the diagnosis, but their family members as well. Discussing a parent’s new diagnosis of ALS/MND with their child can be both challenging and emotional. In addition, children whose parent has been affected by ALS/MND may have fears, concerns, and questions that differ greatly than those experienced by an adult. 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
An abundance of technological innovations are being made to improve quality of life and give us insights into ALS/MND in a meaningful way. This webinar will explore 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
A biomarker, short for biological marker, is an objective and quantifiable measure of biological processes or states. Biomarkers can be used to deepen our understanding of a disease, or quantify its state and severity, and are critical in clinical trials in determining, at a biological level, therapeutic effect. In ALS/MND, we lack definitive, quantifiable biomarkers such as those used in other neurological diseases: tumor size in patients suffering from brain tumors, or number of lesions present on an MRI scan for those multiple sclerosis patients experiencing a relapse. Much research has been done, and is ongoing, on establishing biomarkers suitable for use in ALS/MND research and care. This webinar will provide an overview of those biomarkers emerging as the front runners for the field, and how a combinatorial approach will likely be needed.
Telemedicine Best Practices in Care & Research
While certain practices and fields of medicine have routinely used telemedicine in patient care, the global COVID-19 pandemic has resulted in a widespread uptake in the use of telehealth, across all areas of health care, in order to continue delivering care during these challenging times. While telehealth has ensured continued, and expanded access to, care for patients living with ALS/MND, there are inherently challenges associated with a disease that requires multidisciplinary care, is dealt with constant and rapid changes, and necessitates physical assessments in a clinical trial setting. 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
This is a mid year update of The International Alliance of ALS/MND Associations’ Scientific Advisory Council in honour of Global ALS/MND Awareness Day. Join us to ask questions about topics related to ALS/MND research and clinical trials!
Moderator: Dr. David Taylor
Panelists: Dr. Luis Barbeito, Dr. Adriano Chio, Dr. Kuldip Dave, Dr. Caroline Ingre, Dr. Gethin Thomas
Sharing Success: A Fireside Chat with the 2020 Alliance Award Winners
A palliative care nurse, whose career pivoted to CEO of a national MND association for broader impact. A clinician-scientist who has devoted his career to caring for patients living with ALS/MND, and understanding the triggers that lead to developing the disease. A speech language pathologist providing a voice to ALS patients, even after the disease takes theirs away. An informal conversation with the 2020 International Alliance Award winners on their careers, and their contributions to the field of ALS/MND.
Moderator: Calaneet Balas
Panelists: Carol Birks (Humanitarian Award), Professor Ammar Al-Chalabi (Forbes Norris Award), John Costello (Allied Health Professional Award)
Innovation in Clinical Trial Design
Clinical trial design is evolving in the ALS/MND community and this webinar looks at what the new models are, how they will change the landscape going forward and what are the practical implications for our community. Representatives of the of the HEALEY, Multi-Arm, Group-sequential trial NETwork to increase efficiency of phase 3 ALS clinical trials (MAGNET) and SMART TRIALS in the USA, Europe and Scotland respectively, met virtually.
Panelists: Dr Merit Cudkowicz, Dr Leonard van den Berg, Dr Ruben van Eijk, Dr Siddharthan Chandran
SCIENTIFIC ADVISORY COUNCIL UPDATE AND Q&A FOR GLOBAL ALS/MND AWARENESS DAY
The International Alliance traditionally has an update from the Scientific Advisory Council at the International Alliance meeting and we wanted to offer a mid year update in honour of Global ALS/MND Awareness Day. The esteemed members of the Scientific Advisory Council hosted an informative and interactive session.
Moderator: Dr. David Taylor
Panelists: Dr. Kuldip Dave, Dr. Caroline Ingre, Dr. Gethin Thomas, Dr. Qing Liu, Dr. Nicholas Cole, Dr. Adriano Chiò, Dr. Luis Barbeito, Dr. Jeannine Heckmann, Dr. Piera Pasinelli
COVID-19: EMERGING FROM THE PANDEMIC
The International Alliance is a community of communities and we invited leading voices from each of those communities on June 11th to address how we are collectively emerging from the pandemic. Research, clinical trials, care, telemedicine, pathways to advocacy and change. What silver linings can we take from the pandemic and continue to leverage to help our ALS/MND community towards our goal of a world without ALS/MND?
Moderator: Calaneet Balas
Panelists: Dr. Ammar Al-Chalabi, Dr. Volkan Granit, Angelique van der Lit, Toni Vitale
COVID-19: IMPACT ON CARE
Leading ALS/MND Directors of Care discussed COVID-19 and its impacts to the ALS/MND Community and what has happened to date, what they expect for the immediate and near future with respect to CARE.
Moderator: Sara Feldman
Panelists: Efrat Carmi (Israel), Lisa Droppo (Canada), Nick Goldup (England, Wales and Northern Ireland), Kim Maginnis (United States), Jo Whitehouse (Australia)
COVID-19 Round Table : Impact on PALS & CALS
The PALS & CALS Advisory Council (PCAC) of the International Alliance met for a roundtable discussion on the impacts of COVID-19 in our global ALS/MND community. These discussions took place at two different times so that people in different time zones could participate.
Click here for questions and answers from this roundtable.
COVID-19 Webinar: Impact on Care Globally
This webinar answers your questions about the impacts to CARE globally.
Moderator: Sara Feldman
Panelists: Dr Nortina Shahrizaila, Dr. Paulo Kimaid, Dr. Adriano Chio, Dr. Christopher J. McDermott, Dr. Jinsy Andrews
Click here for questions and answers from this webinar.
COVID-19 : Impact on Research and Clinical Trials Globally and Risk for People with ALS/MND
COVID-19 and its impacts to the ALS/MND Community have been felt globally. This webinar answers your questions about susceptibility and ALS/MND, care, and the impacts to research and clinical trials.
Moderator: Dr. David Taylor
Panelists: Dr. Merit Cudkowicz, Dr. Angela Genge, Dr. Jonathan Glass, Dr. Matthew Kiernan, Dr. Leonard van den Berg