• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube

International Alliance of ALS/MND Associations

  • Members' Login
  • Contact
  • Join the Alliance
  • Donate
  • What is ALS/MND
  • Find a Member Association
  • Support for PALS & CALS
    • Fundamental Rights for People with ALS/MND and Caregivers
    • Research
      • Voice Preservation
      • Open Science
      • Expanded Access
      • Understanding ALS/MND Research
      • Improving Regulatory Pathways
      • Right to Try
      • US FDA Orphan Drug Designation
      • Unproven (Off-Label) Treatments
      • Open Label Extension
    • Advocacy
      • Advocacy Toolkit
      • Emergency Preparedness Toolkit
      • Equitable Access to Therapies
      • Recommendations for Trial Sponsors
    • Clinical Care
      • Genetic Counselling & Testing
      • Mental Health Support
      • Nursing and Symptom Management
      • Nutrition and Swallowing
      • Occupational Therapy and Activities of Daily Living
      • Physiotherapy and Mobility
      • Respiratory Care
      • Speech Therapy and Communication
      • Support for Family & Caregivers
      • Technology
      • Global Clinic Locator
    • Drugs in Development
      • AB Science – Masitinib
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
      • T Regulatory Cell Therapies
      • SOD1 Therapies & Trials
    • Approved Drugs
      • Nuedexta
      • Radicava/Edaravone
      • Riluzole/Tiglutik
      • Rozebalamin/Methylcobalamin
      • Tofersen/Qalsody
    • Drugs No Longer in Development
      • Amylyx – AMX0035
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Orphazyme – Arimoclomol
      • TUDCA Trial
  • Support for Health Professionals
    • Breaking the News in ALS/MND
    • Diagnostic Delay (in development)
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Meeting
    • Allied Professionals Forum
    • Alliance Webinars
    • ALS/MND Connect
    • Global Day
    • March of Faces
    • Patient Fellows Program
    • Global CRLI
    • International Symposium
  • About
    • Who We Are
    • ALS/MND Health Literacy Map
    • Board of Trustees
    • Advisory Councils/Committees
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Advocacy and Public Policy Forum
      • Research Directors Forum
      • Governance Committee
      • Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
      • Forbes Norris Award
      • Humanitarian Award
      • Allied Health Professional Award
      • Student Innovation Award
  • Members
    • Member Registration
    • Forgot Password

Governance Committee

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 SantosMarcela 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 

A woman with short brown hair smiles, wearing a black blazer over a gray top, against a light background.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 specialized in Physical Medicine and Rehabilitation. Since his specialization he has been involved in the rehabilitation management ofneuromuscular diseases.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. 

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

  • Chun Ju Xiao, China

    Chun Ju Xiao, China

  • Kris Van Reusel, Belgium

    Kris Van Reusel, Belgium

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 , FUNDELA, Spain

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Ian Roberts

    Ian Roberts

  • Dad

    Dad

  • João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

    João Marcos Andrietta, Diagnosed 2008 , ABrELA, Brazil

  • Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

    Verónica Isabel Castro Molina, Diagnosed 2014, Argentina

  • Ailsa Malcolm-Hutton, Diagnosed 2013,  MND Association of England, Wales and N Ireland

    Ailsa Malcolm-Hutton, Diagnosed 2013, MND Association of England, Wales and N Ireland

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • IMG_2658

    IMG_2658

  • Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

    Purningam Jacob, Diagnosed 2012 , Asha Ek Hope Foundation, India

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

    Wiebke Braach, Deutsche Gesellschaft für Muskelkranke, Germany

  • Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

    Angela Jansen, Deutsche Gesellschaft für Muskelkranke e.V.-DGM, Diagnosed 1995, Germany

  • Debbie Craghill, USA

    Debbie Craghill, USA

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Leon Ryba, Asociación ELA Argentina

    Leon Ryba, Asociación ELA Argentina

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Mauril Bélanger, Diagnosed 2015 , ALS Canada

    Mauril Bélanger, Diagnosed 2015 , ALS Canada

  • Daniel Hare

    Daniel Hare

  • Susan Anderson, Diagnosed 2014 , Hope Loves Company,  USA

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Claudette Sturk, ALS Society of Canada

    Claudette Sturk, ALS Society of Canada
    Picture2

  • Tison, USA

    Tison, USA

  • Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

    Alfredo Santos, Diagnosed 2013 , ACELA, Colombia

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Armando González Gómez, ACELA, Colombia

    Armando González Gómez, ACELA, Colombia

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

  • Wendy Hendrickson, ALS Hope Foundation, USA

    Wendy Hendrickson, ALS Hope Foundation, USA

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

    Jean Waters, Diagnosed 2004, MND Association of England, Wales and N Ireland

  • Marco Antonio Alvarez Mercado, Mexico

    Marco Antonio Alvarez Mercado, Mexico

  • Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

    Josée Kolijn-de Man, Diagnosed 2015 , ALS Patients Connected, The Netherlands

  • Chris McCauley, Diagnosed 2015 , ALS Canada

    Chris McCauley, Diagnosed 2015 , ALS Canada

  • Nicholas (Nic) Bowman, MND Association of South Africa,  Diagnosed 2016,  Australia

    Nicholas (Nic) Bowman, MND Association of South Africa, Diagnosed 2016, Australia

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Steve Lufkin, USA

    Steve Lufkin, USA
    IMG_3993

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Claudia Cominetti, Associazione conSLAncio Onlus,  Italy

    Claudia Cominetti, Associazione conSLAncio Onlus, Italy

  • Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

    Ana Lilia RodriguezApoyo Integral Gila A.C., Diagnosed 2018, Mexico

  • Leon Ryba, Argentina

    Leon Ryba, Argentina

  • Mahmood Anwar, UK

    Mahmood Anwar, UK

Learn more about the March of Faces

Latest Tweets

  • Just now

Footer

Subscribe to our Bi-Monthly Newsletter

Sign up to receive updates and to hear what's going on in the International Alliance of ALS/MND Associations.

"*" indicates required fields

 
This field is for validation purposes and should be left unchanged.
  • Email
  • Facebook
  • LinkedIn
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2025 The International Alliance of ALS/MND Associations. All rights reserved.


Registered in England: Charity Number 1079504 · Site built by graphics.coop · Powered by WordPress · Members' login