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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
    • Research
      • Voice Preservation
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    • Drugs in Development
      • AB Science – Masitinib
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      • ILB – Tikomed
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Neuronata-R/Lenzumestrocel
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      • Neuvivo – NP001
      • Prilenia Therapeutics – Pridopidine
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      • Nuedexta
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      • Riluzole/Tiglutik
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    • Drugs No Longer in Development
      • Amylyx – AMX0035
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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

  • Lombana, Spain

    Lombana, Spain

  • Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

    Maria Santos Garcia Tellez, Diagnosed 2017 , FYADENMAC, Mexico

  • Inta Grubb, Diagnosed 2014,  MND Australia

    Inta Grubb, Diagnosed 2014, MND Australia

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

    Susan Anderson, Diagnosed 2014 , Hope Loves Company, USA

  • Joy Blakeley, Diagnosed 2017 , MND Australia

    Joy Blakeley, Diagnosed 2017 , MND Australia

  • Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 , ALS Schweiz, Switzerland

  • Claudia Gotti, Brazil

    Claudia Gotti, Brazil

  • Natalya Rybakova, Russian Charity ALS Foundation

    Natalya Rybakova, Russian Charity ALS Foundation

  • Duncan Bayly , MND Australia

    Duncan Bayly , MND Australia

  • Greg Heydet, ALS Hope Foundation, USA

    Greg Heydet, ALS Hope Foundation, USA

  • Willi Klein

    Willi Klein

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

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

  • 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

  • Den Haag, Diagnosed 2016 , The Netherlands

    Den Haag, Diagnosed 2016 , The Netherlands

  • Kirsty Gerlach, MND New Zealand, Diagnosed 2017

    Kirsty Gerlach, MND New Zealand, Diagnosed 2017

  • Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 , Prize4Life, Israel

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • unnamed

    unnamed

  • Denis Blais, Diagnosed 2015 , ALS Canada

    Denis Blais, Diagnosed 2015 , ALS Canada

  • Susan Keldani, Les Turner ALS Foundation, USA

    Susan Keldani, Les Turner ALS Foundation, USA

  • Christian Bär, Germany

    Christian Bär, Germany

  • John and Loretta Russo, USA

    John and Loretta Russo, USA
    final3878

  • Ian and Teresa Roberts

    Ian and Teresa Roberts

  • Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

    Emilienne Verhaegen, ALS Liga Belgium, Diagnosed 2014

  • Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

    Erwin Coppejans, Diagnosed 2007 , ALS Liga België, Belgium

  • Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

    Sam Hayden-Harler, Motor Neurone Disease (MND) Association, UK

  • Dick Dayton, USA

    Dick Dayton, USA

  • Brian Parsons

    Brian Parsons

  • Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

    Xian-Zhang Niu, Diagnosed 2006 , Shaanxi ALS Association, China

  • Juvenal Bayona Romero

    Juvenal Bayona Romero

  • Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

    Soledad Rodriguez, FUNDELA, Diagnosed 2013, Spain

  • Steve Gallagher, ALS Society of Canada

    Steve Gallagher, ALS Society of Canada
    Picture1

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

    Bruno Leanza Mantegna, Diagnosed 1999 , AISLA Onlus, Italy

  • Fabio Correia

    Fabio Correia

  • Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

    Jose Rivero Muñoz, Diagnosed 2015, FYADENMAC, Mexico

  • Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

    Diana Fernandez, Diagnosed 2009 , Asociación ELA Argentina

  • Malcolm Buck, Australia

    Malcolm Buck, Australia

  • Art Eggert, USA

    Art Eggert, USA

  • Irene McCaughey, Diagnosed 2011,  MND Australia

    Irene McCaughey, Diagnosed 2011, MND Australia

  • Olga Cosentino, Diagnosed 2013,  Asociación ELA Argentina

    Olga Cosentino, Diagnosed 2013, Asociación ELA Argentina

  • 393647_2252248542053_984912751_n

    393647_2252248542053_984912751_n

  • Dad

    Dad

  • Steven Spencer, Diagnosed 2014 , MND New Zealand

    Steven Spencer, Diagnosed 2014 , MND New Zealand

  • Richard Clark, MND New Zealand,  Diagnosed 2011

    Richard Clark, MND New Zealand, Diagnosed 2011

  • Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

    Gudjon Sigurdsson, Diagnosed 2004 , MND Association of Iceland

  • 83

    83

  • Joanne Pratt, Diagnosed 2011 , MND Australia

    Joanne Pratt, Diagnosed 2011 , MND Australia

  • Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Jean

    Jean
    jean

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015

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