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.
Vice-Chair
Marcela Santos
Marcela Santos is a Psychologist with Masters in Social Inclusion of People with Disabilities. Her dad lived with ALS for 16 years, and she was one of his primary caregivers. Her dad had a very positive outlook on ALS and the way he embraced it was passed to his daughter. Her father, Alfredo Santos recently passed away on February 8th 2020. She has dedicated all 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 PALS and their CALS in Colombia since 2014. Besides her academic history and professional experience, the personal experience with her dad, allows her to give a much more meaningful care to PALS & CALS.
ALS Association of Colombia (ACELA)
Treasurer
Tammy Moore
Tammy Moore first came to know ALS/MND when her family member was diagnosed in 2008 and over the next 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 through advancing research, care, advocacy and information.
Tammy has served on Boards and Advisory Councils internationally, nationally and regionally – International Alliance of ALS/MND Associations Board Member; Advocacy & Public Policy Committee; Innovation & Technology Advisory Council; Strategic Planning Working Group. Health Charities Coalition of Canada Chair, Board of Directors; Compliance, Accountability, Transparency & Ethics Working Group. Ashiana Holdings, Palliative Care Matters, BC Cancer Agency – Southern Interior, Women’s Enterprise Centre of BC, and local arts, sports and service organizations.
Trustees
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 the third sector 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.
Evy Reviers
Evy Reviers is the daughter of a patient living with Amyotrophic Lateral Sclerosis (ALS). As Chief Executive Officer since 2007 and Chairwoman since 2021 of ALS Liga Belgium, Evy performs the general management of the organisation and stand up for the voice of people living with ALS in Europe and on International scale. She has obtained several priority procedures to increase the quality of life of people with ALS in Belgium. At the European level, she is the Chairwoman of EUpALS, the European Organisation for Professionals and People with ALS, and defends the rights of pALS in scientific advice procedures at EMA. She is also a member of TRICALS, Project MinE, the Rare Diseases Organisation Belgium, patient representative at EMA, and EURORDIS. She has served already for several terms as a member of the Board of Directors of the International Alliance of ALS/MND Associations and is elected again at the 2024 AGM
Clare Sullivan | CEO
Clare 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 Chief Executive of MND Australia having delivered significant policy change, billions of dollars in funding programs and greater engagement for a diverse range of organisations. She now oversees millions of dollars in research funding while supporting State Associations in service delivery to improve the lives for people with motor neurone disease, and their families and carers.
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 with MND while relentlessly pursuing a cure.
Gethin Thomas, PhD
Gethin Thomas has been the Executive Director, Research at MND Australia since 2019. He oversees the research grant program and manages national and international partnerships. He has over 20 years of experience as a biomedical researcher, having published widely and secured almost $4M in research funding. He has extensive review experience across a wide range of journals as well as reviewing grants for Australian and International funding bodies. Over the last 10 years as a senior research manager, he has directed a University Research Office and served as an Associate Dean of Research. He has a deep understanding of research strategy and the research funding system from the grant preparation, application and review process through to management of funded projects at both the researcher and institutional level.
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).
Riccardo Zuccarino
Riccardo Zuccarino is a doctor specialized in Physical Medicine and Rehabilitation. Since his specialization he has been involved in the rehabilitation management ofneuromuscular diseases.
He approached 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. Once a specialist, he dealt with the outpatient and home management of patients suffering from ALS.
Since 2015 he has also been part of the AISLA experts which responds to the needs of patients or their families through the dedicated listening center.
He has been part of the NeMO Clinical Centers since 2011, as Physiatrist Manager at the Arenzano office and since 2021 he has been the Clinical Director of the NeMO Trento
Clinical Center.
He returns to Italy after 2 years spent in the USA, from 2018 to the summer of 2020, at the University of Iowa , Iowa City, where he coordinated an international research group regarding a hereditary peripheral neuropathy, known as Charcot Marie Tooth .
He is a member of the Inherited Neuropaty Consortium, the Peripheral Nerve Society and the European Reference Network. He is a clinical consultant for the Listening Center of AISLA-Italian Association of Amyotrophic Lateral Sclerosis.