The Board of Trustees provides strategic oversight for the Alliance. Trustees bring expertise from member associations, research, healthcare, advocacy, governance, and lived experience from around the world.
Tammy Moore
Chair
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.
Marcela Santos
Vice-Chair
Marcela Santos is a psychologist with a Master’s 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.
Marcela 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 with ALS Association of Colombia (ACELA), 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, her personal experience with her father allows her to give much more meaningful care.
Nina Barakzai
Treasurer
Nina Barakzai is Specialist Counsel, Global Privacy and Information Governance at HPE. She works with cross-functional teams to build sustainable governance and protection in the use of personal data. She sits on the HPE AI Ethics working group, is lead privacy point of contact for M&A transactions, and manages HPE’s interactions with regulators in respect of HPE’s global registrations and its Binding Corporate Rules (BCRs). She is lead Privacy Counsel for HPE’s bank in Ireland. Previous roles include Meta, Unilever, and Sky, covering responsibility for privacy and data governance, advising on policies and standards, and working directly with relevant Data Protection Authorities in the EU.
As both an accountant and solicitor, Nina has held roles in multinational organizations, sat on several advisory committees and industry groups, including the Board of Management of the Royal Dublin Society and the Chartered Institute of Management Accountants Ireland, Eastern branch.
Trustees
Pablo Aquino
Pablo Aquino is a certified English/Spanish translator, journalist, and the Secretary of Asociación ELA Argentina, the first and only charity exclusively focused on ALS/MND in the country. He was one of the Association’s co-founders in November 2011, and has been assisting in the management of projects along with President Dario Ryba and the rest of the board, and developing the international relations of this institution since then. He was the coordinator and personal interpreter for international visits in Argentina, such as Drs. Lucie Bruijn, Jonathan Glass, Ammar Al-Chalabi, Hiide Yoshino, and Angela Genge.
Pablo has been the speaker for Asociacion ELA Argentina at every Annual Meeting of the International Alliance of ALS/MND Associations since 2013, and also participated in the constitution of UNELA, the Latin American Union of ALS/MND Associations. His older and only brother, Alejandro, died of ALS/MND in April 2017.
Jennifer Bedford
Jennifer Bedford is Head of Information and Professional Development at the MND 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. She has also 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 Bar Association — In-House Lawyers and the University of Toronto’s Rotman School of Management.
Valeria Gerbino, PhD
Valeria Gerbino, PhD, is a Group Leader at Fondazione Santa Lucia’s European Center for Brain Research in Rome, Italy, and a permanent researcher at the National Research Council (Italy). She received her PhD in Cellular and Molecular Biology from the University of Rome Tor Vergata, investigating ALS/MND disease mechanisms. After graduating, in 2014 she moved to the United States to join the laboratory of Professor Tom Maniatis at Columbia University (New York, USA), first as a Postdoctoral Fellow, and then as Associate Research Scientist. Throughout her time at Columbia University, she focused on investigating how cell clean-up and immune signalling go wrong in ALS/MND. In 2022 she founded the Biology of Neurodegeneration Laboratory at Fondazione Santa Lucia’s European Center for Brain Research in Rome. Her team investigates innate immune activation and impaired protein clearance in ALS/MND to inform new therapeutic strategies.
Throughout her research career, Valeria has built cross-disciplinary collaborations between Italy, the USA, and the UK, and secured major competitive international grants. She supervises postdocs, graduate and undergraduate students. Since early 2025, she has also served as Scientific Advisor to Associazione conSLAncio Onlus.
Jennifer Hjelle
Jennifer Hjelle has been helping to advance the non-profit health sector for more than 20 years. She has focused her career on engaging local communities in advancing mission priorities through fundraising, advocacy, and volunteerism.
Jennifer started her tenure at The ALS Association in 2012, leading all areas of operations for Minnesota, North Dakota, and South Dakota. She is now the Chief Community Engagement Officer, where she leads all care programming and community engagement across the country.
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, she oversees the general management of the organization and stands up for the voice of people living with ALS/MND in Belgium, Europe, and on the international scale.
In Belgium, Evy 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 several terms as a member of the Board of the Alliance.
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. She 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 of people living with ALS/MND, and their families and caregivers. Drawing on her experience as a CEO, Chief of Staff, and senior executive, she 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.
Yohei Yamada
Yohei Yamada was born in Hokkaido, Japan. Because his parents were teachers, his family moved frequently throughout the region. In 1993, Yohei attended high school in Idaho, USA, and in 1998 enrolled at Idaho State University, where he earned a bachelor’s degree in psychology. He returned to Japan in 2003 and worked for a company importing bovine genetics, primarily from North America. As a translator, negotiator, analyst, and business consultant, he travelled extensively throughout the global dairy industry.
Symptoms of ALS/MND appeared in the summer of 2013, and Yohei was diagnosed in October 2014, one week after his youngest daughter was born. He shared his diagnosis with friends on Facebook on New Year’s Eve 2014. At the start of 2015, a Japanese dairy farmer launched the Ice Bucket Challenge in Yohei’s honour to raise awareness of ALS/MND. The campaign spread throughout the global dairy industry.
Yohei retired from the dairy industry in February 2016 and underwent a tracheotomy that July. In August 2018, American Breeders Service (ABS) Global, a worldwide leader in bovine genetics, named a Holstein bull “Yohei” and has donated proceeds from every unit sold to ALS/MND research. The bull ranked as the #1 Holstein in Canada in April 2023.
In May 2019, Yohei established a company that provides specially trained caregivers to people living with ALS/MND. He was appointed a Director of the Japan ALS Association in April 2022, joined the Board of Directors of the International Alliance of ALS/MND Associations in November 2022, and became Branch Manager of the Japan ALS Association, Hokkaido Branch, in June 2023.
Yohei lives with his wife and three children (two girls and one boy).
Riccardo Zuccarino, MD
Riccardo Zuccarino is a physician specializing in physical medicine and rehabilitation in Italy. Since completing his specialty training, he has focused on the rehabilitation management of neuromuscular diseases. His clinical and research work has centred on hereditary neuropathies and ALS/MND, and he has contributed to the design of several rehabilitation studies on Charcot-Marie-Tooth disease and ALS/MND. He currently provides outpatient and home-based care for people living with ALS/MND.
Since 2015, Riccardo has served as one of the clinical experts and consultants for the Italian Association of Amyotrophic Lateral Sclerosis (AISLA), supporting people living with ALS/MND and their families through one of the organization’s dedicated Listening Centres. Since 2011, he has also been part of the NeMO Clinical Centers, serving as Physiatrist Manager at the Arenzano Centre and, since 2021, as Clinical Director of the NeMO Trento Clinical Center.
Riccardo is a member of the Inherited Neuropathy Consortium, the Peripheral Nerve Society, and the European Reference Network. From 2018 to 2020, he worked at the University of Iowa, where he coordinated an international research group focused on Charcot-Marie-Tooth disease, a hereditary peripheral neuropathy.