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International Alliance of ALS/MND Associations

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    • Fundamental Rights for People with ALS/MND and Caregivers
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      • Voice Preservation
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    • Drugs in Development
      • AB Science – Masitinib
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      • Collaborative Medicinal Development – CuATSM
      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
      • NeuroSense – PrimeC
      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
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      • T Regulatory Cell Therapies
      • Ulefnersen – Ionis Pharmaceuticals
    • 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
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Staff

CEO

Catherine Cummings, CAE, MBA

Catherine CummingsCathy Cummings has an eclectic mix of work experiences in the Canadian not-for-profit sector including the National Payroll Institute, the Canadian Bar Association, the Canadian Corporate Counsel Association, and now as the Executive Director of 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 is a Certified Association Executive (CAE) designation.

On a personal note, Cathy is married to her wonderful husband Marty, has three awesome 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.

To contact Catherine, please email cathy.cummings@als-mnd.org.

Contract Staff

The International Alliance works with various contractors across the globe to achieve its mission of a world free of ALS/MND. These contractors work in unison with our Executive Director to operate the Alliance. Read more about each contractor below: 

Advocacy and Membership Lead

David Ali

 
David is an experienced CEO and Board member across several different environments. He also has an extensive background in social policy, communications, strategy development and implementation, relationship building and engagement, advocacy, organizational performance, industry reviews and investigations.
 
When asked around 23 years ago to join the MND Victoria Board, David had never heard of ALS/MND, let alone understood the cruel disease it is.  Since then, he has volunteered in many ways including raising awareness, fundraising, and being on the Board of Directors of MND Victoria, MND Australia and the International Alliance of ALS/MND Associations.  David was until March 2024 the Chief Executive Officer of MND Australia. 
 
David lives in Melbourne, Australia – year-after-year rated one of the world’s most livable cities.  Time away from work is spent with family, enjoying running and his home city.
 
To contact David, please email david.ali@als-mnd.org. 
 

Innovation and Technology Lead

Jarnail Chudge

Jarnail Chudge was a Design and Innovation Architect in the Enable Group at Microsoft Technology + Research where he worked on projects where the primary focus is to design, develop, and deliver empowering and inclusive experiences which are sustainable, enhance human awareness, and augment a person’s intelligence by amplifying it and which allow the space to create and develop new skills and capabilities. As the co-founder of Microsoft Soundscape, which uses 3D spatial audio to created audio Augmented Reality, Jarnail has had special focus on how a product built on inclusive design principles primarily for the Blind and Low-Vision community, can have universal value for everyone by demonstrating the broader value of the technology in a range of different scenarios.

Jarnail started his career in academia focusing on the burgeoning field of socio-technical systems where he gained first-hand experience of integrating business, user, and technology needs. Making the switch to industry Jarnail has extensive international experience across a range of industry sectors, both as an individual contributor and also as a team-leader and manager. Jarnail’s work on the Enable team on Microsoft Soundscape and on “Hands-Free” which uses eye-control technology, is characterized by a philosophy grounded in building sustainable business ecosystems based on internal and external collaborations where the value-exchange between the different stakeholders is based on mutual benefit and ultimately, the impact on the user.

Scientific Director

Martina de Majo, PhD

Martina de Majo, PhD, has extensive experience researching disease mechanisms of ALS/MND and Frontotemporal Dementia (FTD). Dr. de Majo earned her Bachelor’s degree in Biotechnology and Master’s degree in Pharmaceutical Biotechnology with honours from the Sapienza University of Rome (Italy). She then received her PhD in Clinical Neuroscience from King’s College London (UK) and completed her postdoctoral training at University of California, San Francisco (USA).

In addition to her academic training, Dr. de Majo worked as a principal investigator in the industry sector, directing several National Institutes of Health projects around ALS/FTD disease in vitro modelling. She joined the Alliance as Scientific Director in 2024 and has been coordinating the Alliance research portfolio since.

To contact Martina, please email martina.demajo@als-mnd.org

Program Coordinator

Jessica Mabe

Jessica Mabe was born in London and had a bilingual upbringing in Bogotá, Colombia. She relocated to the UK after finishing school, where she completed her university degree in French & German with Business Studies  at the Aberystwyth University in Wales, followed by a Masters in Mass Communications at Leicester University (UK), Masters in Digital Marketing and Advertising at the University of Nebrija (Spain), and a Masters in Digital Marketing from the EAN University (Colombia). Jessica developed her skills as a sales and digital marketing professional leading teams in the UK and Ireland in the technology sector.

In 2014, Jessica’s mother got diagnosed with bulbar onset ALS/MND, and she decided to return to Colombia early in 2015 to help care for her alongside her father. Her mother passed away on February 21, 2018, and shortly after she joined ACELA, the Colombian ALS/MND Association, as an active volunteer supporting family caregivers in their ALS/MND journey. In July 2021, she joined the Alliance as Programs Coordinator.   

Executive Assistant

Liana Maltby, CAP

Liana Maltby is a skilled administrative support professional who has experience in research and preparation of meeting agendas and minutes, scheduling, and meeting and event planning.  She achieved her Certified Administrative Professional (CAP) certificate through the International Association of Administrative Professionals.

Before joining the Alliance Team in 2022, Liana had a successful career serving in numerous roles with the same employer for over 37 years.  As an Executive Assistant, she supported a provincial Board of Directors and members of a provincial association.  She interacted and built strong relationships with municipal and provincial government officials and was involved in government lobby days advocating for legislative change.  Most recently, Liana was elected as Municipal Councillor in her local community.  

Liana, along with her husband and eldest daughter live in Ontario, Canada, and their youngest daughter lives in Alberta, Canada.

To contact Liana, please email liana.maltby@als-mnd.org.

Strategic Project Manager

Julia Simon, BCom

Julia Simon has a Bachelor of Commerce in Marketing from the John Molson School of Business in Montreal, Canada. Most recently, Julia worked in open source community building the technology industry. In 2019, she experienced a major burnout, which eventually led her to share her story through conference talks about normalizing mental health issues and advocating for systemic change in the workplace. She is a human-centric generalist who is authentically curious. Julia is a multilinguist (English, French, German, Spanish) and loves to connect with people in a meaningful way.

When her father was diagnosed with bulbar onset ALS-FTD in January 2022, she became one of his primary caregivers. He passed away in April of the same year, which led her to learn about death positivity, medical assistance in dying and end-of-life care. She has since taken courses in peer support work as well as being an end-of-life doula.  Julia spends her down time with her son, Felix, and her cat, Flash.

To contact Julia, please email julia.simon@als-mnd.org.

Communications Manager

Lynne Yryku

Lynne Yryku is a versatile communications manager known for her professional approach and attention to detail. With a background in English-French-Spanish translation and over 15 years of experience, Lynne has worked with diverse associations on project ranging from print publications to marketing campaigns to website management systems. Her ability to understand member needs and translate them into engaging content with practical takeaways for her clients sets her apart. Through her work with the Alliance, she strives to share the vision of a world free of ALS/MND with millions of people worldwide.

Lynne lives in Ontario, Canada, where she is Mom to creatures two- and four-legged. She is an outdoor enthusiast who loves running, camping, kayaking, biking and exploring nature with her husband and kids.

To contact Lynne, please email lynne.yryku@als-mnd.org.

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About

  • Who We Are
  • Board of Trustees
  • Advisory Councils/Committees
    • PALS and CALS Advisory Council
    • Scientific Advisory Council
    • Advocacy and Public Policy Forum
    • Research Directors Forum
    • Governance Committee
    • Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Jean

    Jean
    jean

  • Eric Von Schaumburg, USA

    Eric Von Schaumburg, USA

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Willi Klein

    Willi Klein

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Wilfried Leusing, Diagnosed 2010 , DGM, Germany

    Wilfried Leusing, Diagnosed 2010 , DGM, Germany

  • Tammy Moore and Eddy Lefrancois

    Tammy Moore and Eddy Lefrancois

  • Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

    Maria Lucia Wood Saldanha, Associação Pró-Cura da ELA, Brazil

  • David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

    David Solomon, Diagnosed 2015, MND Association of England, Wales and N Ireland

  • Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

    Sharon Corosanite, Diagnosed 2014 , ALS Hope Foundation, USA

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Amparo Muriel Engativa, Colombia

    Amparo Muriel Engativa, Colombia

  • Enzo Maccarrone, AISLA ONLUS, Italy

    Enzo Maccarrone, AISLA ONLUS, Italy

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

  • Tison, USA

    Tison, USA

  • Chen Chun-Chin

    Chen Chun-Chin

  • Michael Lee, Australia

    Michael Lee, Australia

  • Jose Espinosa, Argentina

    Jose Espinosa, Argentina

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

    Lucy Lintott, Diagnosed 2013 , MND Scotland, UK

  • Lombana, Spain

    Lombana, Spain

  • Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

    Danny Reviers, Diagnosed 1979 , ALS Liga België, Belgium

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

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

  • Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

    Animesh Kumar, Diagnosed 2013 , Asha Ek Hope Foundation, India

  • Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 , FUNDELA, Spain

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Dawn Morton, Diagnosed 2014 , MND Scotland, UK

    Dawn Morton, Diagnosed 2014 , MND Scotland, UK

  • Michel Perrozzo, ARSLA, Diagnosed 2015, France

    Michel Perrozzo, ARSLA, Diagnosed 2015, France

  • Frank "Papa" Taylor, USA

    Frank “Papa” Taylor, USA

  • 83

    83

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Claire Garry, USA

    Claire Garry, USA
    20200117_214643

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • Eddy LeFrançois, Diagnosed 1992,  ALS Canada

    Eddy LeFrançois, Diagnosed 1992, ALS Canada

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

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

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

  • Karl Hughes, Diagnosed 2010 , IMNDA,  Ireland

    Karl Hughes, Diagnosed 2010 , IMNDA, Ireland

  • Liam Dwyer, England

    Liam Dwyer, England

  • IMG_1211

    IMG_1211

  • Shay Rishoni

    Shay Rishoni

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Debbie Craghill, USA

    Debbie Craghill, USA

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