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International Alliance of ALS/MND Associations

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  • What is ALS/MND
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  • Support for PALS & CALS
    • 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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      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
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      • Prilenia Therapeutics – Pridopidine
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      • Neudexta
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      • Amylyx – AMX0035
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      • Cytokinetics – Reldesemtiv
      • Orphazyme – Arimoclomol
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Innovation and Technology Council

The role of the Innovation and Technology Advisory Council (ITAC) is to make recommendations regarding technology and innovation strategies in line with the Alliance’s strategic goals and principles which will benefit those living and affected by ALS/MND globally.

Chair of the ITAC

Blair Casey

USA

Blair Casey is one of the original members of Team Gleason, starting as Steve Gleason’s caretaker after his diagnosis of ALS in 2011. After three years of caretaking, Blair’s hands-on knowledge was needed to help others living with ALS live more productive and purposeful lives. As Team Gleason’s Executive Director, Blair Casey provides executive oversight to partnerships, innovation, finance, and operations.

Casey chairs Team Gleason’s Technology Advisory Committee and has spearheaded partnerships with technology companies like Apple, Comcast, Google, Microsoft, Synchron, Neuralink and more. These relationships have allowed Team Gleason to continue innovating technology that provides people with ALS the latest in accessibility functions.

Blair was named on Gambit’s 2022 40 Under 40 list for his work and dedication to advocating for the ALS community through technological innovations.

Council Members

Richard Cave

UK

Richard Cave is a speech and language therapist practicing in the UK, and is working with the MND Association and with Google Research on the Euphonia project (g.co/Euphonia). Richard recently completed a Masters of Research with distinction at UCL on voice banking and has published in this area. Currently he is part-way through a PhD at UCL focused on Assistive Technology for people with ALS/MND. Richard has worked with adults living with acquired and progressing neurological conditions throughout his career, in various roles from community-based AAC specialist to team lead on a hyper-acute inpatient hospital ward. Prior to training in speech therapy, Richard worked for Dell Computers for 12 years as a technology project manager.

During his spare time Richard has run 11 marathons with his wife and running partner Annette, and plays the drums and bass guitar – most recently for a jazz big band.

Richard says “The International Alliance presents an incredible opportunity for technology innovation, the kind that gives real and practical help for people living with ALS/MND and I am honoured to be part of it.”

Jarnail Chudge

UK

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.

John Costello

USA

John Costello is a Speech-Language Pathologist and Director of the Augmentative Communication Programs at Boston Children’s Hospital (BCH) where he has been providing clinical care as part of a interprofessional team and focusing on innovations for nearly 38 years. John created the first of its kind dedicated Augmentative Communication Program in the intensive care/acute care unit at Boston Children’s where the power of personal voice when experiencing a temporary non-speaking condition was revealed.  This led to the creation of the BCH preoperative message banking model for patients in the ICU.  At the invitation of The Joint Commission, he joined a team focused on re-writing national standards for all hospitals in the United States focused on addressing communication vulnerability. In 2014, a local ALS clinic requested their patients be seen by the BCH Augmentative Communication Program for comprehensive AAC services.  This led to development of a robust protocol to support people living with ALS to explore AAC collaboratively and proactively and the broadening of the BCH Message banking model to support robust proactive voice preservation for people living with ALS.

Sara Feldman, PT, DPT, ATP

USA

Sara Feldman, PT, DPT, ATP, is the Clinical Liaison for the ALS Hope Foundation in Philadelphia, PA, USA. Dr. Feldman is the Physical Therapist and Assistive Technology Professional at the MDA/ALS Center of Hope, where she has been serving people with ALS/MND for more than 20 years. In addition to clinical care, she is involved in clinical trials, education and the use of assistive technology. She is Co-Chair of the Northeast ALS Consortium (NEALS) Physical Therapy Committee and is the Clinical Evaluator Representative on the NEALS Executive Committee. She has been an active delegate to the Alliance since 2007 and has participated in three partnerships, with ABrELA, Iceland MND Association and IsrALS. She is committed to ensuring the Partnership Programme continues to expand and grow. In 2015, Sara assumed the role of the Co-Chair of the Allied Professionals Forum. Sara brings a clinician’s perspective and experience to the Alliance Board and until there is a cure, will continue to work towards improving care.

ALS Hope Foundation

Mike Gardner

Canada

Mike Gardner is a C-Suite executive with extensive international experience in fintech software, health-tech, capital raising, strategic planning, operational execution and generating high value shareholder exits. He is talented at formulating strategies that maximize equity value creation that blend a keen understanding of individual human potential, group dynamics, and competitive company and product positioning.

Phil Green

USA

Phil Green and his wife, Jennifer

A loving husband to his wife Jennifer (at left in photo), Phil Green is also a dedicated father to four children (Arianne, Hunter, Parker, and Whitney). Four years after doing the Ice Bucket Challenge, Phil was diagnosed with ALS in August of 2018 and immediately dedicated himself to making a difference in the fight against this horrific disease. Phil is active in helping multiple ALS organizations and institutions (Team Gleason, I AM ALS, Augie’s Quest, ALS TDI, ALS Cure Project, UW Medicine) with promoting ALS legislation and policy issues, increasing awareness and raising funds to find effective treatments and cures, and providing much needed support services for ALS patients and families. He was privileged to be a Patient Fellow at the 2019 International Symposium on ALS/MND and has also served as a Consumer Reviewer for the DoD ALS Research Program. Phil is a graduate of the University of Washington where he was on the 1991 National Championship UW Football team. He has spent the past 25 years building a career in developing technology solutions for brands such as Sony, Hewlett Packard, and Home Depot.

Catherine Holloway

UK

Catherine Holloway is an Associate Professor at University College London’s Interaction Center and co-founder and Academic Director of the Global disability Innovation Hub.

 

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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

  • Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

    Ana María Zavala, FYADENMAC, Diagnosed 2019, Mexico

  • Mike Rannie,  ALS Canada,  Diagnosed 2017

    Mike Rannie, ALS Canada, Diagnosed 2017

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

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

  • Wilfried Leusing

    Wilfried Leusing

  • Natalya Rybakova, Russia

    Natalya Rybakova, Russia

  • Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

    Laurie Petit-Jean, Diagnosed 2012 , ARSLA, France

  • Glen Elison,  ALS Hope Foundation,  Diagnosed 2019,  USA

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Mark Miller

    Mark Miller

  • Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

    Cassio Fernando da Silva, Diagnosed 2013 , ABrELA, Brazil

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
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  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

    Feng Gin Sun, Diagnosed 2014 , Shaanxi ALS Association, China

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Jean

    Jean
    jean

  • Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

    Camilla Heiberg Freiberg, Muskelsvindfonden, Denmark

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Andrea Zicchieri, Associazione conSLAncio Onlus, Italy

    Andrea Zicchieri, Associazione conSLAncio Onlus, Italy
    AndreaZicchieri_conSLAncioItaly

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Alan Liz Ogg 29042016 000799 lo res

    Alan Liz Ogg 29042016 000799 lo res

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

    Guoqiang Xu, Diagnosed 2016 , Shaanxi ALS Association, China

  • unnamed

    unnamed

  • Orlando Ruiz, Diagnosed 2001,  ACELA, Colombia

    Orlando Ruiz, Diagnosed 2001, ACELA, Colombia

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

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

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

  • Maurice Leclerc, Canada

    Maurice Leclerc, Canada

  • Liz Ogg, Diagnosed 2013 , MND Scotland, UK

    Liz Ogg, Diagnosed 2013 , MND Scotland, UK

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

    Charlie “Hark” Dourney, Diagnosed 2007 , Hark ALS, USA

  • Rosie Riley, Les Turner ALS Foundation, USA

    Rosie Riley, Les Turner ALS Foundation, USA

  • JP

    JP

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

  • 83

    83

  • Jon Newsome, Les Turner ALS Foundation, USA

    Jon Newsome, Les Turner ALS Foundation, USA

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Bob Simonds and Drew O'Neil, USA

    Bob Simonds and Drew O’Neil, USA

  • Hanne Stenmose, Muskelsvindfonden, Denmark

    Hanne Stenmose, Muskelsvindfonden, Denmark

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

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

  • Mary Thomas, Diagnosed 2013 , MND Australia

    Mary Thomas, Diagnosed 2013 , MND Australia

  • Zelina Brito, Diagnosed 2018, Brazil

    Zelina Brito, Diagnosed 2018, Brazil

  • Len Johnrose,  MND Association,  Diagnosed 2017,  England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Tison, USA

    Tison, USA

  • Jason Goodman, Les Turner ALS Foundation, USA

    Jason Goodman, Les Turner ALS Foundation, USA

  • Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

    Sally Pauls, Diagnosed 2006 , Les Turner ALS Foundation

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

    Alejandro Aquino, Diagnosed 2011 , Asociación ELA Argentina

  • Bjarne Hytjanstorp, ALS Norge, Norway

    Bjarne Hytjanstorp, ALS Norge, Norway

  • 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

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

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