Unlocking data and accelerating research: announcing the Patient Advocacy Group of the Longitude Prize on ALS

Amyotrophic lateral sclerosis (ALS), the most common form of motor neurone disease (MND), is a serious and life-limiting disease with no cure. While advanced computing and AI offer promising new pathways to understand complex diseases, scientific progress is currently restricted by - amongst others - data fragmentation and rigid data-sharing policies.

To challenge systemic barriers hindering scientific research and more rapid therapy development, we are announcing the membership of the Patient Advocacy Group (PAG) for the Longitude Prize on ALS.

The mission to accelerate drug discovery

The Longitude Prize on ALS is a £7.5m ($10m USD) international programme established with a singular goal: to accelerate drug discovery for those living with ALS. Over five years, global multidisciplinary teams will compete in a three-phased programme to identify, prioritise, and validate high-potential drug targets.

To drive this innovation, the Prize has granted its 20 competing Stage 1 teams access to the largest and most comprehensive ALS patient dataset of its kind. This resource combines multiple types of biological information that have never before been harmonised and made accessible to researchers within a single, secure environment.

While access to this rich resource enables unprecedented analysis, significant barriers to making patient data widely available still exist. If we are to achieve tangible advancements in drug discovery, we must transform global data-sharing practices to foster better, faster science.

Putting the patient voice at the center

To achieve these systemic changes, the patient voice must be the central driving force. The PAG was convened to formalise this commitment of the Longitude Prize, serving as a vital bridge between scientific innovation and the daily realities of living with ALS.

The PAG will act as a powerful voice to influence change, spearhead patient-led campaigns to champion collaborative data-sharing, and empower patients to consent to data sharing.

"We have embedded patient input at every step of the Prize—from initial Prize design to judging. By leading campaigns, providing real-world context to the programme, and participating in the Judging Panel, the PAG ensures this initiative remains focused on delivering impact for the global ALS community." - Caroline Purslow, Head of Health

Meet the members

The PAG is composed of a dedicated group of individuals, both with lived experience of ALS and a deep understanding of the landscape, bringing world-class expertise across pharmaceuticals, finance, medicine, and communications.

• Marc Barlow (Chair): A healthcare industry expert with extensive experience leading drug and diagnostic launches in neurology, Marc has chaired high-level boards across the pharmaceutical and MedTech sectors. His leadership is informed by his first-hand lived experience with ALS, and he also serves as a member of the Prize’s international Judging Panel.

• Emma Keeling: Living with hereditary SOD1 ALS, Emma has been a vocal advocate for patient access to treatments, providing testimony for NICE appraisals and participating in clinical trials. With over 30 years of experience in healthcare communications, she now advises companies on physical and mental health diversity and inclusion.

• Sandra Rogers: Specialising in international R&D and project management, Sandra has a background in the pharmaceutical industry. After losing her sister to ALS, she became a dedicated advocate and currently serves on the Policy and Campaigns Advisory Committee at the Motor Neurone Disease Association (MNDA).

• Ed Rapp: Ed brings over 37 years of global executive experience in finance, marketing, and manufacturing and was most recently Group President at Caterpillar Inc. Following his ALS diagnosis in 2015, he founded "Stay Strong vs. ALS" to invest in research and assistive technologies. He chairs the Advisory Board of Answer ALS (a funder and data partner of the prize) and sits on the prize's Programme Board.

• Dr Michael Robinson: A physician and ALS advocate, Michael’s career spans academic medicine and senior leadership roles in the pharmaceutical industry at Eli Lilly and AbbVie. Diagnosed with ALS in 2015, he serves on the NEALS Executive Committee and chairs their Patient and Caregiver Advisory Committee.

• Tris Dyson: 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.

The establishment of the PAG marks a pivotal milestone for the Longitude Prize on ALS. Without more open and collaborative data practices, research stalls. With this extraordinary group of advocates guiding our strategy, we can ensure that the people who face the daily realities of ALS are leading the charge on changing data sharing practices, incentivising innovation, and accelerating the hunt for a cure.

Thank you to Marc, Sandra, Ed, Emma, Michael, and Tris for their commitment to steering this work.