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.
Nick Goldup, Chair
MND Association, UK
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’.
ALS Hope Foundation, 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..
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.
Rolls-Royce Global IT Innovation Strategist, UK
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.
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.
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.
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.
British Columbia, Canada
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.