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International Alliance of ALS/MND Associations

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Awards

The International Alliance of ALS/MND Associations presents three awards to recognise excellence in the ALS/MND community. The awards are described below, along with a list of previous winners.

 

The Forbes Norris Award

The Forbes Norris Award, first presented in 1994, honours the memory of Dr. Forbes “Ted” Norris (1928-1993), a neurologist who dedicated his career to helping people with ALS/MND. The purpose of this prestigious award is to encourage a combination of two major qualities: management of and advances in understanding ALS/MND, to the benefit of people living with the disease.

The criteria for the Forbes Norris award are that the nominee must be

  • a major participant in the delivery of outstanding ALS/MND patient care;
  • a significant contributor to the medical literature on ALS/MND clinical management or basic science; and
  • a member of team/s undertaking ongoing research into ALS/MND care, management and/or basic science.

Nominations for the Forbes Norris Award are considered annually; the awards are presented each year during the opening ceremony of the International Symposium on ALS/MND.  If there are no qualified candidates nominated in a particular year, the award will not be granted.

2020 Forbes Norris Award Recipient

There is absolutely no doubt that the 2020 winner of this award not only meets, but exceeds the criteria for this award. This year’s winner is Professor Ammar Al Chalabi.

Ammar is a dedicated and diligent clinician that has greatly enhanced the integration of insights from research with compassionate care, enabling people affected by MND/ALS to make more informed choices in key domains of life. His contributions to the criteria areas of research, literature, and patient care are unparalleled at not only the local level but also at the global level. Whether it is seeing a patient at King’s MND Care and Research Centre, contributing to The International Alliance, leadership roles in Project Mine or TRICALS, lending his expertise to the ALS Association in Argentina as an honorary Advisor, using his talents as the Deputy Editor of Brain Journal, or advocating with Doddie Weir and the MND Association to get more government funds, he is the consummate professional, but more importantly he is kind and patient centric.

Ammar’s contributions have improved the experience of people with MND/ALS through work on clinical and genetic subtypes of ALS/MND paving the way for a personalised medicine approach and the opportunity for patients to make informed decisions on their care.

In addition to his person-centered approach to patient care, Ammar is a huge contributor to research. His research contributions span many disciplines including basic science, large observational studies and clinical trials. He is often one of the world’s most highly cited researchers.

In the area of literature, Ammar is a pioneer of complex genetics as applied to ALS. Significant contributions have included

  • identification of ALS and FTD linkage on chromosome 9p, subsequently paving the way for the discovery of mutations in the C9orf72 gene as a cause of disease.
  • Ammar is a co-lead of Project-MinE, a multinational effort to sequence 15,000 people with ALS and 7,500 controls to discover genetic and epigenetic risk factors. Through this effort, four new risk genes were identified in 2016 and another in 2018.
  • Ammar has been unique in applying his expertise in complex genetics to clinical trials, for example, showing that people with genetic variants of UNC13a gene react differently to treatment with lithium carbonate. This is a theme that will become ever more important for future the development of ‘personalised medicine’.
  • He has led international consortia to identify disease modifying genetic influences in ALS/MND using his deep understanding of genetics and statistical genetics.
  • Building on his experience setting up the South East ALS Register, Ammar co-leads the MND Register for England, Wales and Northern Ireland

His nomination stated “Ammar stands out for his openness, both in terms of resource sharing and collaboration but also in terms of acknowledgement for people’s contribution to research. His amiable personality and leadership skills mean the best people from multiple disciplines work together and can improve standards of care and research.”

Professor Ammar Al-Chalabi has earned the highest respect globally from patients, healthcare professionals and researchers for his contributions to ALS/MND.

Previous Winners

2018 Dr. Angela Genge

2017 Dr. Merit Cudkowicz

2016 Dr. Mamede de Carvalho

2015 Dr. Terry Heiman-Patterson

2014 Dr. Matthew Kiernan

2013 Dr. Leonard van den Berg

2012 Dr. Benjamin Brooks

2011 Professor Orla Hardiman

2010 Dr. Edward Kasarskis

2009 Professor Christopher Shaw

2008 Dr. Michael Strong

2007 Dame Professor Pamela Shaw

2006 Dr. Walter G. Bradley

2005 Dr. Stanley Appel

2004 Dr. Robert G. Miller

2003 Dr. Robert H. Brown

2002 Professor Vianney DeJong

2001 Dr. Lewis P. (Bud) Rowland

2000 Professor Michael Swash

1999 Dr. Andrew Eisen

1998 Dr. Hiroshi Mitsumoto

1997 Professor Nigel Leigh

1996 Dr. Donald Mulder

1995 Dr. Teepu Siddique

1994 Professor Vincent Meininger

 

The Humanitarian Award

The Humanitarian Award was inaugurated in 2000 by the International Alliance of ALS/MND Associations to recognise a non-scientific contribution to the fight against ALS/MND. The Humanitarian Award is intended to recognise and encourage individuals and/or groups whose work makes, or has made, a contribution of international significance for people affected by ALS/MND.

2020 Humanitarian Award Recipient

The recipient of the 2020 Humanitarian Award is Carol Birks., CEO of MND Australia and former Chair of the International Alliance of ALS MND Associations.  The dictionary definition of the word Humanitarian is “a person who seeks to promote human welfare” and there is no doubt that this years Humanitarian Award winner does exactly that in the ALS/MND Community. There are not enough superlatives in the English language to say how deserving this year’s recipient is of this award! In fact, in her nomination, words like Committed, Strategic, Compassionate, Collaborative and Caring were words that were used to describe her.

Carol is a consummate professional who has dedicated over twenty years to ensuring quality care and support is provided to individuals living with MND not only in Australia and the Asia Pacific Region, but around the globe.

Her willingness to share her knowledge and experience with governmental agencies/bodies unfamiliar with MND; with others within the MND community in Australia; and with ALS/MND organizations outside of Australia shows her passion and commitment to making a difference in the lives of people who live with MND and their families. She has been instrumental in supporting PACTALS and keeping a strong tie to this region for the International Alliance. She has been a huge part of the global ALS/MND community for over twenty years, and we are a better community because of it.

Nominations for the Humanitarian Award are considered annually; the awards are presented each year during the opening ceremony of the International Symposium on ALS/MND. If there are no qualified candidates nominated in a particular year, the award will not be granted.

Previous Winners

2000 The MND Association of England, Wales and Northern Ireland

2001 Yuko Matsuoka

2002 Dee Holden Norris

2003 Dr. David Oliver

2005 The MND Association of South Africa

2006 Mrs. Misao Hashimoto

2007 Tricia Holmes

2008 Rodney Harris

2009 Professor Kathy Mitchell

2010 Jette Moeller

2011 Danny Reviers and Mia Mahy

2012 Gudjon Sigurdsson

2013 Dr. Jeffrey Dietch

2014 Wendy Abrams

2015 Jesus Mora

2016 James Allen Heywood and Benjamin Heywood

2017 Peter Frates, Patrick Quinn and Anthony Senerchia, Jr., the founders of the Ice Bucket Challenge.

2018 Dr. Brian Dickie

2019 Dario Ryba

 

Allied Health Professional Award

The Allied Health Professional Award was inaugurated in 2018 by the International Alliance of ALS/MND Associations to recognise an individual committed to providing exceptional care to people with ALS/MND. To celebrate the sharing of expertise and exploration of new ideas to improve patient care and to recognise significant contribution to the advancement of ALS/MND clinical management.

2020 Allied Professional Award Recipient

The recipient of the 2020 Allied Health Professional Award winner is John Costello of Boston’s Children’s Hospital.

John’s commitment to providing people living with ALS/MND with a voice is demonstrated in his many years of exceptional care and insatiable quest for knowledge. He is dedicated to educating both himself and others on the newest information and technology available.

John has been a major contributor to the knowledge bank of the International Alliance by participating annually in the Allied Professionals Forum and he recently started Chairing a sub committee of our Innovation and Technology Advisory council that is looking at developing decision trees around communication devices.

He is a willing partner and collaborator in projects aimed at enhancing and enriching the lives of people living with ALS/MND, and for that, we are eternally grateful.

Nominations for the Allied Health Professional Award are considered annually: this award is presented each year during the Allied Professionals Forum between the Alliance Meeting and the International Symposium on ALS/MND. If there are no qualified candidates nominated in a particular year, the award will not be granted.

Previous Winners

2018 Dr. Sara Feldman

2019 Rachel Marsden

 

Primary Sidebar

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

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

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

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

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

  • Josée Kolijn-de Man, Diagnosed 2015 - ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 – ALS Patients Connected, The Netherlands

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Charlie “Hark” Dourney, Diagnosed 2007 - Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 – Hark ALS, USA

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Steven Spencer, Diagnosed 2014 - MND New Zealand

    Steven Spencer, Diagnosed 2014 – MND New Zealand

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Sally Pauls, Diagnosed 2006 - Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 – Les Turner ALS Foundation

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

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

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Joyce Rusinak, Forbes Norris ALS Center, USA

    Joyce Rusinak, Forbes Norris ALS Center, USA

  • Eddy LeFrançois, Diagnosed 1992 - ALS Canada

    Eddy LeFrançois, Diagnosed 1992 – ALS Canada

  • Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

    Brigitte Wernli, Association ALS Switzerland, Diagnosed 2014, Switzerland

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

    Liong Ting Ngu, MND Malaysia, Diagnosed 2014, Malaysia

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

    Norm MacIsaac, ALS Society of Canada, ALS Society of Quebec, Diagnosed 2014, Canada

  • Zelina-Brito-Diagnosed-2018-Brazil

    Zelina-Brito-Diagnosed-2018-Brazil

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Irene McCaughey, Diagnosed 2011 - MND Australia

    Irene McCaughey, Diagnosed 2011 – MND Australia

  • 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

  • Orlando Ruiz, Diagnosed 2001 - ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001 – ACELA, Colombia

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

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

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Ian Roberts

    Ian Roberts

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

    Erwin Coppejans, Diagnosed 2007 – ALS Liga België, Belgium

  • Brian Lovell, Diagnosed 2011 - MND Australia

    Brian Lovell, Diagnosed 2011 – MND Australia

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

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

    Susan Anderson, Diagnosed 2014 – Hope Loves Company, USA

  • Lachlan Terry, MND Australia, Diagnosed 2015, Australia

    Lachlan Terry, MND Australia, Diagnosed 2015, Australia

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

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

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

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Kirsten Harley, Diagnosed 2013 - Australia

    Kirsten Harley, Diagnosed 2013 – Australia

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

Learn more about the March of Faces

ALS/MND Meetings

  • Annual Meetings 2020
  • Awards
  • Webinars

Past meetings

  • 2019 Meetings
  • 2018 Meetings
  • 2017 Meetings
  • 2016 Meetings
  • 2015 Meetings
  • 2014 Meetings
  • 2013 Meetings
  • 2012 Meetings
  • 2011 Meetings

Allied Professionals Forum Registration

The International Alliance of ALS/MND Associations will host a virtual Allied Professionals Forum spread over two days to accommodate time zones on 3 – 4 December 2020.

Click here to register for the Allied Professionals Forum

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