Patient Advocacy Group

Marc Barlow is a healthcare industry expert with extensive experience across pharmaceuticals and MedTech, specialising in neurology. He's an expert in drug and diagnostic launches for various neurological conditions, and has led successful NICE appraisal processes. A former Board member of the European Brain Council, Marc brings a unique perspective to his work, informed by his first-hand lived experience with MND. He has significant experience chairing and contributing to high-level boards and advisory groups.

Marc chair's the Patient Advocacy Committee and is also a member of the Judging Panel of the Longitude Prize on ALS.

Ed retired from Caterpillar Inc. in July 2016 as a Group President, having served in the Executive Office leading Resource Industries, Construction Industries, and as CFO. 

With over 37 years of global experience across finance, marketing, and manufacturing, his career was cut short by an ALS diagnosis in late 2015. Ed founded Stay Strong vs. ALS to invest in cure research and assistive technologies, and chairs the Advisory Board of Answer ALS, while serving on the Packard Center Board at Johns Hopkins. He also sits on the AbbVie and XOS boards and the University of Missouri Business School Strategic Development Board.

Emma has hereditary SOD1 ALS - a genetic form of MND which only affects 1-2% of people with the condition. She has provided patient testimony for the ongoing NICE appraisal of Tofersen and is involved in campaigning for equal access in the UK. She is also participating in a new trial of high-density surface EMG in Tofersen patients, funded by LifeArc.

Emma worked in healthcare communications for more than 30 years, leading campaigns across a wide range of therapy areas, including neurology and rare diseases.

Since retiring on health grounds, she has channelled her expertise into advising companies on diversity and inclusion considerations relating to physical and mental health conditions. She also served as a member of LifeArc’s MND Insights Group.

Dr. Michael J. Robinson is a physician and ALS advocate whose career spans academic medicine, clinical research, and pharmaceutical leadership. He earned his medical degree from Queen’s University in Kingston, Ontario, where he also completed specialty training in Adult Psychiatry and Child & Adolescent Psychiatry, followed by a fellowship in Psychosomatic Medicine at Virginia Commonwealth University.

He later served as an Associate Professor at Queen’s University. In 2004, Michael transitioned to the pharmaceutical industry, joining Eli Lilly and Company and later AbbVie, where he held senior leadership roles in Clinical Development and Medical Affairs. Diagnosed with ALS/MND in 2015, he is now actively engaged in ALS research and advocacy. He serves on the NEALS Executive Committee and chairs the NEALS Patient and Caregiver Advisory Committee and contributes to multiple clinical trial advisory efforts.

Sandra Rodgers has an extensive background in the pharmaceutical industry, specialising in international R&D and project management. She has served as a portfolio manager tracking compounds from medicinal chemistry through to development across multiple therapeutic areas.

Following the loss of her sister to MND eighteen months after diagnosis, Sandra became a dedicated advocate for the community. She currently serves on the Policy and Campaigns Advisory Committee at the Motor Neurone Disease Association, where she focuses on research initiatives and improving access to medicines.

Founder and Executive Director of Challenge Works, Tris has spent his career designing and delivering high-impact challenge prizes to solve some of the world's most pressing problems, including the Longitude Prize on ALS. He was diagnosed with ALS in 2023.