The Governance Committee supports strong oversight, accountability, and compliance across the Alliance.
Committee members advise the Board on governance matters, review relevant policies and procedures, and help ensure the Alliance meets its legal, regulatory, and organizational responsibilities.
Co-Chairs of the Governance Committee
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.
Marcela Santos
Marcela Santos is a psychologist with a master’s degree 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 through public institutions, private organizations, and NGOs. Since 2014, she has volunteered as a psychologist, providing free psychotherapy to people living with ALS/MND and their caregivers. Her personal experience with her father, combined with her professional expertise, allows her to provide more meaningful care.
Committee Members
Catherine Cummings, CAE, MBA
Cathy Cummings has an eclectic mix of experience in the Canadian not-for-profit sector, including the National Payroll Institute, the Canadian Bar Association, the Canadian Corporate Counsel Association, and the International Alliance of ALS/MND Associations. Cathy has also volunteered extensively with United Way, the Canadian Society of Association Executives, and many charities, including ALS Ontario, ALS Canada, and Ceridian Cares. She holds an MBA from Athabasca University and the Certified Association Executive (CAE) designation.
On a personal note, Cathy is married to her husband, Marty, has three children, and has a mission nicknamed the “Bouquet Project,” where she is trying to reverse the statistic that people are 10 times more likely to complain than praise.
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 through 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 Sudden Infant Death Services of Illinois.
Having lost her brother-in-law to ALS, Laura is committed to advancing research and improving care for the ALS community.
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.
Michele Messmer Uccelli
Michele Messmer Uccelli holds a master’s degree in Disability Studies from the University of Leeds. She has more than 25 years of experience in research and project development promoting empowerment in health at national and international levels, working in the United States and Italy. Her broad experience includes advocacy, stakeholder engagement, and social health research.
For many years, she was Director of Client and 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 oncology and neuroscience. She is the author of numerous scientific publications and 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 more than 20 years of experience in leadership and advocacy across 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, 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 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.