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International Alliance of ALS/MND Associations

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Alliance Webinars

Upcoming Webinars

WHAT DO I NEED TO KNOW ABOUT CLINICAL TRIALS

September 1 @10:00-11:00 AM (EST New York)

Join us for the first webinar of our Cure in ALS/MND series: What do I need to know about clinical trials? In this webinar we will learn more about the importance of clinical trials, how to find a suitable clinical trial, what to consider if you want to take part and next steps.

INNOVATION IN CLINICAL TRIAL DESIGN

September 21 @7:00-8:00 AM (EST New York)

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.

VOICE BANKING

October 12 @7:00-8:00 AM (EST New York)

In this webinar we will learn more about the assistive technology of voice banking, how it works, when in the ALS/MND journey should it be done, and how to get access.

GENETICS – COUNSELLING & TESTING

October 25 @7:00-8:00 AM (EST New York)

Join us in the second webinar of our Cure in ALS/MND series: Genetics – Counselling and Testing. This webinar will provide an update on the latest in ALS/MND Genetics and what is happening in the field.


Previous Webinars

SCIENTIFIC ADVISORY COUNCIL UPDATE & Q&A

Join us for the mid-year update from the Scientific Advisory Council. This interactive webinar will be informative but will also give you the opportunity to ask questions.

Recording coming soon.


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. Panelists include; Dr. Wendy Johnston, a neurologist from Canada AND Director of ALS Clinic, Sara Feldman, a senior Physical Therapist and Assistive Technology Professional from USA, and Albert Koo, a person living with ALS/MND from Malaysia.

English and Spanish captions available with this video. 
Para subtítulos en español, ve a configuración en el menú del video, selecciona subtítulos y luego español.


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. Speakers include Jessica Mabe, Programs Coordinator and Catherine Cummings, Executive Director.

English and Spanish captions available with this video. 
Para subtítulos en español, ve a configuración en el menú del video, selecciona subtítulos y luego español.


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. We found that: access to quality of care and treatments is not universally available, access to multidisciplinary care is an important factor, knowledge and access to genetics counselling and testing is limited, remuneration for PALS and CALS is lacking and caregivers feel without a voice. Learn more about the data, strengths and weaknesses at a global level, the questions raised and the topics that require further attention. Speakers include Jessica Mabe, Programs Coordinator and Catherine Cummings, Executive Director.

English and Spanish captions available with this video. 
Para subtítulos en español, ve a configuración en el menú del video, selecciona subtítulos y luego español.


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. Panellists include David Taylor (Humanitarian Award recipient), Dr. Adriano Chio (Forbes Norris Award recipient), Melinda Kavanaugh and Sarah Solomon (Allied Health Professional Award recipient).

English and Spanish captions available with this video. 
Para subtítulos en español, ve a configuración en el menú del video, selecciona subtítulos y luego español.

 


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

The Alliance´s Fundamental Rights were updated in 2021 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 touched 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

Recent discoveries are adding significant knowledge to the understanding of genetics in ALS/MND and potential treatments. This webinar provided 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

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

 

 

Click here for questions and answers from this webinar.

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Events/Programs

  • Calendar of Events/Programs
  • Alliance Webinars
  • Alliance Meeting
  • Allied Professionals Forum
  • ALS/MND Connect
  • Global Day
  • March of Faces
  • International Symposium on ALS/MND

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Ailsa Malcolm-Hutton, Diagnosed 2013 - MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013 – MND Association of England, Wales and N Ireland

  • Fabio-Correia-2

    Fabio-Correia-2

  • ALS-0571

    ALS-0571

  • Marcel R. Wernard, Diagnosed 2016 - ALS Patients Connected, The Netherlands

    Marcel R. Wernard, Diagnosed 2016 – ALS Patients Connected, The Netherlands

  • Ann-Nicol

    Ann-Nicol

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Jo-and-her-dog-2

    Jo-and-her-dog-2

  • Fabio-Carvalho3

    Fabio-Carvalho3

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

  • Philip Brindle, MND Association, Diagnosed 2015, England

    Philip Brindle, MND Association, Diagnosed 2015, England

  • Willi-Klein

    Willi-Klein

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Mike Rannie, ALS Canada, Diagnosed 2017, Canada

    Mike Rannie, ALS Canada, Diagnosed 2017, Canada

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • 55405686-609D-4060-BB1E-8697F36FA62F

    55405686-609D-4060-BB1E-8697F36FA62F

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Elkin-Ramiro-Gaviria-Muñoz-diagnosed-Dec-2018-v3

    Elkin-Ramiro-Gaviria-Muñoz-diagnosed-Dec-2018-v3

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Mark-Miller

    Mark-Miller

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Susan Anderson, Diagnosed 2014 - Hope Loves Company, USA

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Osiel Mendoza, Diagnosed 2016 - ALS Therapy Development Institute, USA

    Osiel Mendoza, Diagnosed 2016 – ALS Therapy Development Institute, USA

  • MND-Robbie-Caliste

    MND-Robbie-Caliste

  • Margreth Burger-Saile, Diagnosed 2011 - ALS Schweiz, Switzerland

    Margreth Burger-Saile, Diagnosed 2011 – ALS Schweiz, Switzerland

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Phil-Rossall-MND-Association

    Phil-Rossall-MND-Association

  • jspic

    jspic

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • David-Bishop-copy-2

    David-Bishop-copy-2

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Daniel-Hare-copy

    Daniel-Hare-copy

  • pALS-Guido-De-Mets-ALS-Liga-Belgium

    pALS-Guido-De-Mets-ALS-Liga-Belgium

  • Erwin Coppejans, Diagnosed 2007 - ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • MoF-Christian-Bär

    MoF-Christian-Bär

  • Alejandro Aquino, Diagnosed 2011 - Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 – Asociación ELA Argentina

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • final3878

    final3878

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Danny Reviers, Diagnosed 1979 - ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 – ALS Liga België, Belgium

  • Cath

    Cath

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