Leaving a Legacy of Data at PatientsLikeMe

Recently, our ALS community mourned the loss of Persevering, a highly proactive three-star member who was known for his unfailing efforts to support fellow patients, record and share data, report website problems and recruit ALS clinical trial participants.  Offline, he was also a tireless advocate for ALS awareness and research, attending conferences and lobbying on… Continue reading Leaving a Legacy of Data at PatientsLikeMe

Living with ALS: What We’ve Learned

Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease).  Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population. ALS, which stands for amyotrophic… Continue reading Living with ALS: What We’ve Learned