• Skip to primary navigation
  • Skip to main content
  • Skip to primary sidebar
  • Skip to footer
  • Email
  • Facebook
  • Instagram
  • 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 of People with ALS/MND and Caregivers
    • Research
      • 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
    • 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
    • Drugs in Development
      • AB Science – Masitinib
      • Amylyx – AMX0035
      • Biogen – Tofersen
      • BrainStorm Cell Therapeutics – NurOwn
      • Clene Nanomedicine – CNM-Au8
      • Collaborative Medicinal Development – CuATSM
      • Cytokinetics – Reldesemtiv
      • Kadimastem – AstroRx
      • Mitsubishi Tanabe Pharma America – Oral Edaravone
      • Orphazyme – Arimoclomol
      • T Regulatory Cell Therapies
    • Approved Drugs
      • Radicava/Edaravone
      • Neudexta
      • Riluzole/Tiglutik
  • Support for Health Professionals
    • How to Break the News in ALS/MND
  • Events/Programs
    • Calendar of Events/Programs
    • Alliance Webinars
    • Alliance Meeting
    • Allied Professionals Forum
    • ALS/MND Connect
    • Global Day
    • March of Faces
    • International Symposium on ALS/MND
  • About
    • Who We Are
    • Board of Directors
    • Committees/Advisory Councils
      • Scientific Advisory Council
      • PALS and CALS Advisory Council
      • Innovation and Technology Council
      • Governance Committee
      • Budget and Finance Committee
    • Staff
    • History
    • Archives
      • Newsletters
      • Meetings
    • Awards
      • Student Award Nomination
      • Forbes Norris Award Nomination
      • Humanitarian Award Nomination
      • Allied Health Professional Award Nomination
  • Members
    • Member Registration
    • Forgot Password

Innovation and Technology Council

The role of the Innovation and Technology 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

Blair Casey is one of the original members of Team Gleason when he started as Steve’s caretaker. He currently serves as Chief Impact Officer of the Team Gleason Foundation. Even though Blair has a new role, he will always be known as the “Manny” from his role as Steve Gleason’s primary caregiver, as reflected in the film ‘Gleason.’

After three years of caretaking, Blair’s hands-on knowledge of living with ALS was needed to help others living with ALS live more productive and purposeful lives. As Team Gleason’s Chief Impact Officer, Blair provides executive oversight of partnerships, program services, and finances. Blair chairs Team Gleason’s technology advisory committee and is the lead on initiatives with technology industry leaders such Comcast, Google, Microsoft, Amazon, and Neuralink. Blair is instrumental in continuing to push Team Gleason and the advancement of assistive technology.

Council Members

Sara Feldman

USA

Sara Feldman

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

Tammy Moore

Canada

Tammy Moore

Tammy Moore is the CEO of the ALS Society of Canada. ALS Canada is responsible for Canada’s national ALS research program, federal advocacy and serving over 1,000 people living with ALS in the province of Ontario.

Tammy made this transition from the private sector, where she founded and led a communications and marketing agency. Later she worked with a private equity group in C-suite roles during acquisition and restructuring and through a business management consulting practice.

Tammy has served in senior leadership roles on International, National and local Boards and Steering Committees in not for profit, health, community, tech and entrepreneurship sectors. Outside of the office, Tammy has been a competitive sailor for almost 10 years at a national level and has crewed on a team that won the Canadian Women’s National Keelboat Championships.

ALS Society of Canada

Phil Green

USA

Phil Green and his wife, Jennifer
Phil Green and his wife, Jennifer

A loving husband to his wife Jennifer, Phil 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.

Jarnail Chudge

UK

Jarnail Chudge

Jarnail Chudge is a Design and Innovation Architect in the Enable Group at Microsoft Technology + Research where he works 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.

Stuart Moss

UK

Stuart Moss

Stuart has worked for Rolls-Royce for over 22 years and has extensive experience across a variety of fields. His knowledge extends from sales to creative design and technology strategy. Previously responsible for Future Technology Strategy he has worked on a variety of cutting-edge innovations and patents. In 2019 Stuart collaborated with the UK MND Association and multiple IT companies to create the NextGen Think Tank, a group aimed at helping people with MND. Passionate about innovation, Stuart believes that given the right stimulation anyone can innovate. His favourite quote is “Intelligence is the ability to adapt to change” by Stephen Hawking.

 

Mike Gardner

Canada

Mike Gardner

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. 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.

 

 

 

 

Richard Cave

UK

Richard 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.”

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.

Board Liason

Nick Goldup

UK

Nick Goldup

Nick joined the MND Association of England, Wales and Northern Ireland as Director of Care Improvement in August 2017 and joined the Board of the International Alliance in December 2018. Prior to this he spent 6 years as Director of Partnerships at the children’s charity Whizz-Kidz working alongside senior health commissioners and stakeholders to implement improvements to care and streamline procurement activities. Nick is a member of the UK National Wheelchair Alliance aiming to improve provision of wheelchairs for people living with MND and has worked as a Non-Exec Director of a wound and Lymphedema service for 5 years. Nick has also served as a national advisor for a selection of UK National Health Service and Department of Health improvement programmes.

Prior to his roles in the charity sector, Nick enjoyed a successful corporate career working in a variety of blue chip procurement roles over a 15 year period, including Tesco, AMEC, Mitsubishi Electric Europe and for three years as a buyer based in Jakarta, Indonesia.

During his spare time Nick is a keen cyclist and runner having run the London Marathon twice, completed 7 triathlons and numerous cycling events including Land’s End to John O’Groats, 5 UK capitals in 12 days and London to Paris all of which combined raised £½ million for charity.

Nick says ‘ I am honoured to represent the MND Association as a member of the International Alliance and look forward to working with my International colleagues to support and improve outcomes for people living with MND/ALS’.

MND Association

Primary Sidebar

About

  • Who we are
  • Board of Directors
  • Committees/Advisory Councils
    • Scientific Advisory Council
    • PALS and CALS Advisory Council
    • Innovation and Technology Council
    • Governance Committee
    • Budget and Finance Committee
  • Staff
  • History
  • Archives
    • Newsletters
    • Meetings
  • Awards

  • Dorette Lüdi, Diagnosed 2014 - ALS Schweiz, Switzerland

    Dorette Lüdi, Diagnosed 2014 – ALS Schweiz, Switzerland

  • Roxana Canova, Diagnosed 2012 - Asociación ELA Argentina

    Roxana Canova, Diagnosed 2012 – Asociación ELA Argentina

  • Conny van der Meijden, Diagnosed 2001 - ALS Netherlands

    Conny van der Meijden, Diagnosed 2001 – ALS Netherlands

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

    Glen Elison, ALS Hope Foundation, Diagnosed 2019, USA

  • Frank "Papa" Taylor

    Frank “Papa” Taylor

  • Stephanie Christiansen Hall, Canada

    Stephanie Christiansen Hall, Canada

  • Catherine Pearce, Australia

    Catherine Pearce, Australia

  • Steven Gallagher, Canada

    Steven Gallagher, Canada

  • Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

    Richard Clark, MND New Zealand, Diagnosed 2011, New Zealand

  • Timothy Holman, Switzerland

    Timothy Holman, Switzerland

  • Francisco Perez Palop, Diagnosed 2013 - FUNDELA, Spain

    Francisco Perez Palop, Diagnosed 2013 – FUNDELA, Spain

  • Robbie Caliste, UK

    Robbie Caliste, UK

  • Chris McCauley, Diagnosed 2015 - ALS Canada

    Chris McCauley, Diagnosed 2015 – ALS Canada

  • Christian Bär, Germany

    Christian Bär, Germany

  • Shay Rishoni, Diagnosed 2011 - Prize4Life, Israel

    Shay Rishoni, Diagnosed 2011 – Prize4Life, Israel

  • Denis Blais, Diagnosed 2015 - ALS Canada

    Denis Blais, Diagnosed 2015 – ALS Canada

  • Monica Soriano, Diagnosed 2011 - Asociación ELA Argentina

    Monica Soriano, Diagnosed 2011 – Asociación ELA Argentina

  • Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

    Antonio Ventriglia, ALS Liga Belgium, Diagnosed 2013, Belgium

  • Carlos Alberto Arango, Colombia

    Carlos Alberto Arango, Colombia

  • Fabrice Kamp, Germany

    Fabrice Kamp, Germany

  • Guido De Mets, Belgium

    Guido De Mets, Belgium

  • Art Eggert, USA

    Art Eggert, USA

  • Zabun Nassar, MND Association, Diagnosed 2016, England

    Zabun Nassar, MND Association, Diagnosed 2016, England

  • Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

    Rolf Mauch, Association ALS Switzerland, Diagnosed 2015, Switzerland

  • Ann Nicol

    Ann Nicol

  • Karl Hughes, Diagnosed 2010 - IMNDA, Ireland

    Karl Hughes, Diagnosed 2010 – IMNDA, Ireland

  • Wilfried Leusing, Diagnosed 2010 - DGM, Germany

    Wilfried Leusing, Diagnosed 2010 – DGM, Germany

  • Carlos Gomez Matallanas, Diagnosed 2014 - FUNDELA, Spain

    Carlos Gomez Matallanas, Diagnosed 2014 – FUNDELA, Spain

  • Len Johnrose, MND Association, Diagnosed 2017, England

    Len Johnrose, MND Association, Diagnosed 2017, England

  • Valdomiro Xavier Honório, Brazil

    Valdomiro Xavier Honório, Brazil

  • Maurice LeClerc, ALS Canada

    Maurice LeClerc, ALS Canada

  • Oliver Juenke, DGM, Germany

    Oliver Juenke, DGM, Germany

  • Colm Francis Davis, Ireland

    Colm Francis Davis, Ireland

  • Luis Antonio Pimenta Lima, Brazil

    Luis Antonio Pimenta Lima, Brazil

  • Alberto Baez Murillo, Colombia

    Alberto Baez Murillo, Colombia

  • UK-Mahmood-Anwar

    UK-Mahmood-Anwar

  • Angie Bordaen, Diagnosed 2014 - ALS Liga België, Belgium

    Angie Bordaen, Diagnosed 2014 – ALS Liga België, Belgium

  • Phil Rossall, MND-Association, UK

    Phil Rossall, MND-Association, UK

  • Fernando Ocampo Cardona, Colombia

    Fernando Ocampo Cardona, Colombia

  • Elisabeth Zahnd, Switzerland

    Elisabeth Zahnd, Switzerland

  • David Watson, MND Scotland, Diagnosed 2018, Scotland

    David Watson, MND Scotland, Diagnosed 2018, Scotland

  • Ali Var, Turkey

    Ali Var, Turkey

  • England-Lee-Millard, UK

    England-Lee-Millard, UK

  • Elkin Ramiro Gaviria Muñoz, Diagnosed  December 2018

    Elkin Ramiro Gaviria Muñoz, Diagnosed December 2018

  • Mary Thomas, Diagnosed 2013 - MND Australia

    Mary Thomas, Diagnosed 2013 – MND Australia

  • Joy Blakeley, Diagnosed 2017 - MND Australia

    Joy Blakeley, Diagnosed 2017 – MND Australia

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

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

  • Duncan Bayly - MND Australia

    Duncan Bayly – MND Australia

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

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

  • Joanne Pratt, Diagnosed 2011 - MND Australia

    Joanne Pratt, Diagnosed 2011 – MND Australia

Learn more about the March of Faces

Latest Tweets

  • Just now

Subscribe to our Bi-Monthly Newsletter

Fill out the form below to subscribe to the Alliance’s bi-monthly newsletter, packed with updates from members associations from around the world!

Footer

Keep in touch

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
  • Instagram
  • Twitter
  • YouTube
Return to top of page

Contact | Disclaimer | Privacy Notice & Cookies | Sitemap

Copyright © 2023 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