“Our brother Stephen was living with ALS and we thought, ‘there has to be a better way.’ There is. By sharing our experiences, we can all contribute new data that can accelerate research and help create better treatments. Our experiences can actually change medicine… for good.”
Jamie & Ben Heywood
Our first member-based team of advisors will give feedback on research initiatives and create new standards for working with patients, while three new scientific advisors will help further shape the Open Research Exchange.
Members will share their experiences to help researchers better characterize the disease and develop treatment strategies. The collaboration will leverage the Open Research Exchange (ORE), an online hub for developing and sharing new health measures that better reflect patients’ experiences living with and managing disease.