The role of the International Alliance of ALS/MND Associations’ Governance Committee is to review and report to the Board on items and areas within it’s remit and to develop and monitor procedures to ensure the organization’s legal and regulatory compliance.
Co-Chairs
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.
Marcela Santos
Marcela 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.
Committee Members
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.
Laura Freveletti
Laura Freveletti is Chief Executive Officer of the Les Turner ALS Foundation. She comes to the ALS field with 30 years of experience in executive leadership, most recently as senior program officer at The Allstate Foundation. Throughout her career, she has been dedicated to driving social impact via strategic planning, fundraising, and innovative programming, with experience as a senior fundraising executive at the YMCA of Metropolitan Chicago and Lyric Opera of Chicago, as well as service as board president of the Sudden Infant Death Services (SIDS) of Illinois. Having lost her brother-in-law to ALS, she is committed to advancing research and improving care for the ALS community.
Michele Messmer Uccelli
Michele has a Masters in Disability Studies from the University of Leeds. She has over 25 years of experience in research and project development promoting empowerment in health at national and international levels working nin the United States and in Italy. Her broad experience includes advocacy, stakeholder engagement and social health research. For many years she was Director of Client & Healthcare Professional Programs and Professional Education at the Italian Multiple Sclerosis Society. Michele has participated in numerous international working groups and committees in the field of neuroscience. She continues to promote patient involvement in healthcare as a consultant to major Italian hospitals in the fields of oncology and neuroscience. She is the author of numerous scientific publications. Michele has several years of experience as a volunteer in an Italian hospice dedicated to ALS and oncology
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.
Riccardo Zuccarino
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.
