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International Alliance of ALS/MND Associations

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      • Neudexta
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      • Amylyx – AMX0035
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Board of Trustees

Chair

Calaneet Balas

Calaneet Balas became CEO and President of The ALS Association in December 2017. She joined the organization in June 2016 as the Executive Vice President of Strategy, leading all three mission areas, including global research, public policy and care services, which work in an integrated fashion to find a cure, advance treatments and enhance the quality of life for people living with ALS. Calaneet joined the Board of Directors of the International Alliance of ALS/MND Associations in December 2017. Calaneet was elected Chair in December 2018.

The ALS Association

Vice-Chair

Marcela Santos

Marcela Santos is a Psychologist with Masters in Social Inclusion of People with Disabilities. Her father, Alfredo Santos, lived with ALS/MND for 16 years, and she was one of his primary caregivers. He had a very positive outlook on ALS/MND, and the way he embraced it was passed to his daughter. He passed away on February 8, 2020.

She has dedicated her academic and professional life to the care of people with disabilities in Colombia in public and private entities, and NGOs. She has been a volunteer psychologist providing psychotherapy at no cost to people living with ALS/MND and their caregivers in Colombia since 2014. Besides her academic history and professional experience, the personal experience with her father allows her to give a much more meaningful care.

ALS Association of Colombia (ACELA)

Treasurer

Tammy Moore

Tammy Moore first came to know ALS/MND when a family member was diagnosed in 2008. Over the subsequent five years, she was witness to the challenges her family faced. In 2014,Tammy became the CEO of the ALS Society of Canada, a national organization with a mission to improve the lives of Canadians affected by ALS/MND through advancing research, care, advocacy and information.

Tammy has served on Boards and Advisory Councils internationally, nationally and regionally. With the Alliance specifically, she has served on the Board, Advocacy & Public Policy Forum, Innovation & Technology Advisory Council and Strategic Planning Working Group. She has also been involved with Health Charities Coalition of Canada Board, and Compliance, Accountability, Transparency & Ethics Working Group; Ashiana Holdings; Palliative Care Matters; British Columbia Cancer Agency – Southern Interior; Women’s Enterprise Centre of British Columbia; and local arts, sports and service organizations.

ALS Society of Canada

Trustees

Jennifer Bedford

Jennifer Bedford is Head of Information and Professional Development at the Motor Neurone Disease Association in the UK. Her role is to lead and manage the development and implementation of the Association ’ s education and information strategy. She collaborates extensively with healthcare researchers. Her passion is bringing research into information, practice and education. She has led the creation of a vibrant Community of Practice for health and social care professionals and led other significant work streams in the UK including the establishment of the Annual Stephen Hawking MND Lecture and the review of the NICE Guideline for MND.

Jennifer is a Chartered Manager and a management professional with extensive experience in both the Public and Third Sectors . She has significant expertise in strategic planning and development, quality assurance and systems, and matrix relationship operation. She is particularly interested in social change and is a Fellow of the Royal Society of Arts

Mary-Ellen Bench

Mary Ellen Bench advises on land use planning and municipal affairs at StrategyCorp. She has over 30 years of experience in municipal public service, mostly in leadership roles, where she was often engaged on project teams outside of the traditional legal role because of her practical approach to achieving solutions that work for all parties. has actively participated in many governance reviews and has sat on many not-for-profit boards based in Canada and the United States.  Mary Ellen also holds the Certified In-House Counsel (CIC.C) designation from the Canadian Corporation Counsel Association and the University of Toronto’s Rotman School of Management.

Angela Harris

Angela Harris has extensive leadership and Board experience within charities, social enterprises and community groups for over 15 years. She has worked in UK-wide health-focused charities across government, the National Health Service (NHS), and private and public sectors to deliver positive change for beneficiaries while influencing government and NHS. She was instrumental in the PACE process working with the Scottish Medicines Consortium to approve secondary breast cancer drugs in Scotland, as well as her role within the Cancer Coalition to drive government change on workforce and the introduction of a psychological therapies framework.

While in her role at Changing Faces, Angela led the commissioning project to bring national support services to Wales and established UK partnerships, including with the Association of Ambulance Chief Executives, Police Scotland and Scottish Fire Service to embed equality and diversity. Driven by positive change, Angela was also Chair of Birthlink, an Edinburgh-based adoption charity, during its strategic review to extend its work into care.

MND Scotland

Evy Reviers

Evy Reviers is the daughter of a person who passed away from ALS/MND. As Chief Executive Officer since 2007 and Chairwoman since 2021 of ALS Liga Belgium, Evy performs the general management of the organization and stand up for the voice of people living with ALS/MND in Belgium, Europe and on the international scale.

In Belgium, she has obtained several priority procedures to increase the quality of life of people with ALS/MND. At the European level, she is the Chairwoman of the European Organisation for Professionals and People with ALS (EUpALS), and defends the rights of people living with ALS/MND in scientific advice procedures at the European Medicines Agency (EMA). She is also a member of TRICALS, Project MinE, the Rare Diseases Organisation Belgium, patient representative at EMA, and EURORDIS. She has also served for several terms as a member of the Board of the Alliance.

ALS Liga Belgium

Clare Sullivan 

Clare Sullivan is a results-oriented leader with over 20 years’ experience in leadership and advocacy across a range of sectors including health, community, infrastructure and government. Clare is driven to make Australia a better place to live and to improve the lives of Australians in her professional and personal life.

Clare comes to the role of CEO of MND Australia having delivered significant policy change, billions of dollars in funding programs and greater engagement for a diverse range of organizations. She now oversees millions of dollars in research funding while supporting State Associations in service delivery to improve the lives for people living with ALS/MND, and their families and caregivers.

Drawing on her experience as a CEO, Chief of Staff and senior executive, Clare is driven to deliver strong results for MND Australia, working to continually improve the care and support services
available for people living with ALS/MND while relentlessly pursuing a cure.

MND Australia

Yohei Yamada

Yohei Yamada was born in Hokkaido, Japan, but as his parents were teachers, he moved around Hokkaido with his family. In 1993, Yohei attended high school in Idaho, USA. In 1998, Yohei attended Idaho State University, where he received his bachelor’s degree in psychology. Yohei returned to Japan in 2003 and worked for a company that imported bovine genetics, primarily from North America. Yohei was a translator, negotiator, analyst, and business consultant who travelled around the globe for the dairy industry.

Symptoms of ALS/MND appeared, around the summer of 2013. Yohei was diagnosed with ALS/MND in October 2014, a week after his youngest daughter was born. He announced the diagnosis of ALS/MND to his friends on Facebook New Year’s Eve of 2014. A Japanese dairy farmer started the Ice Bucket Challenge to raise awareness of ALS/MND for Yohei on the New Year of 2015. This movement spread throughout the dairy industry worldwide.

Yohei retired from the dairy industry in February 2016 and had a tracheotomy in July 2016. In August 2018, an American company and the worldwide leader in Bovine Genetics called American Breeders Service (ABS) Global named a bull after Yohei and has donated every unit sold to ALS/MND researchers. The holstein bull, YOHEI, ranked as the #1 bull in Canada in April 2023.

In May 2019, Yohei established a company to send specially trained caregivers to ALS/MND fighters. Yohei was appointed as a Director of Japan ALS Association in April 2022, joined the Board of Directors of the International Alliance of ALS/MND Associations in November 2022, and a Branch Manager of Japan ALS Association Hokkaido Branch in June 2023.

Yohei lives with his wife and three children (two girls and one boy).

Japan ALS Association

Riccardo Zuccarino, MD

Riccardo Zuccarino is a doctor specializing in physical medicine and rehabilitation in Italy. Since he became specialized, he has been involved in the rehabilitation management of neuromuscular diseases. He came to the field of hereditary neuropathies and neuromuscular diseases, and collaborated in the design of several rehabilitation studies dedicated to Charcot-Marie-Tooth disease and ALS/MND. He currently works with the outpatient and home management of people living with ALS/MND.

Since 2015, he has been one of the AISLA experts and clinical consultants, which responds to the needs of people living with ALS/MND or their families through one of the dedicated Listening Center of the Italian Association of Amyotrophic Lateral Sclerosis (AISLA). He has also been part of the NeMO Clinical Centers since 2011 as Physiatrist Manager at the Arenzano office, and the Clinical Director of the NeMO Trento Clinical Center since 2021.

He is a member of the Inherited Neuropathy Consortium, the Peripheral Nerve Society, and the European Reference Network. He also spent two years spent in the USA, from 2018 to 2020, at the University of Iowa, where he coordinated an international research group regarding a hereditary peripheral neuropathy, known as Charcot Marie Tooth. 

Italian Association of Amyotrophic Lateral Sclerosis (AISLA)

Primary Sidebar

About

  • Who we are
  • Board of Trustees
  • Advisory Councils/Committees
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Scientific Advisory Council
    • Advocacy and Public Policy Forum
    • Research Directors Forum
    • Governance Committee
    • Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

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

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

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Fabio Carvalho

    Fabio Carvalho

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Jo Knowlton and her dog, Scotland

    Jo Knowlton and her dog, Scotland

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Peng Yi-Wen

    Peng Yi-Wen

  • Mike Small, Motor Neurone Disease (MND) Association, UK

    Mike Small, Motor Neurone Disease (MND) Association, UK

  • Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

    Lin Yong Yi, Taiwan MND Association, Diagnosed 2004

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Jan Zuring, Diagnosed 2010 , The Netherlands

    Jan Zuring, Diagnosed 2010 , The Netherlands

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Brian Lovell, Diagnosed 2011 . MND Australia

    Brian Lovell, Diagnosed 2011 . MND Australia

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

    Fabio Carvalho, Associação Pró-Cura da ELA, Brazil

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Hollister

    Hollister
    hollister

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

    Chen Yin Xue, Taiwan MND Association, Diagnosed 1995, Taiwan

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Shera Mukherjee, Diagnosed 2013,  Asha Ek Hope Foundation, India

    Shera Mukherjee, Diagnosed 2013, Asha Ek Hope Foundation, India

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

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • Daniel Hare

    Daniel Hare

  • Andrietta

    Andrietta

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

    Calum Ferguson, Diagnosed 2010 , MND Scotland, UK

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Bob Simonds and Drew O'Neill , Les Turner ALS Foundation, USA

    Bob Simonds and Drew O’Neill , Les Turner ALS Foundation, USA

  • Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

    Yolanda Armendariz, Diagnosed 2017 , FYADENMAC, Mexico

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

  • Antonio Ventriglia,  ALS Liga Belgium,  Diagnosed 2013

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Lachlan Terry,  MND Australia,  Diagnosed 2015

    Lachlan Terry, MND Australia, Diagnosed 2015

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • Roy

    Roy
    roy

  • Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

    Hans Dieter Olszewski, Diagnosed 2010 , DGM, Germany

  • Ali Var, Turkey

    Ali Var, Turkey

  • Brian Parsons

    Brian Parsons

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