Search Results for: "als awareness"

PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS

ALS, Patient Experiences / By

TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent […]

PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS Read More »

“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS

ALS, Patient Experiences / By

PatientsLikeMe member mmsan66 was diagnosed with ALS back in 2008, but she’s been fortunate to experience an unusually slow progression, which currently affects only her legs. As a college professor, financial planner and ALS advocate, she raises awareness through her work with the Massachusetts Chapter of the ALS Association. She even finds time to visit

“The human spirit is more resilient than we think” – PatientsLikeMe member mmsan66 shares her journey with ALS Read More »

“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge

ALS, Patient Experiences / By

Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)

“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge Read More »

What lies ahead – PatientsLikeMe member John shares his journey with ALS

1 Comment / ALS, Patient Experiences / By

It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and

What lies ahead – PatientsLikeMe member John shares his journey with ALS Read More »

Raising awareness for amyotrophic lateral sclerosis

1 Comment / ALS / By

May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t

Raising awareness for amyotrophic lateral sclerosis Read More »

Leaving a Legacy of Data at PatientsLikeMe

2 Comments / ALS, Patient Experiences, Research / By

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

Leaving a Legacy of Data at PatientsLikeMe Read More »

Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy

3 Comments / ALS / By

You may remember our interview with ALS advocate Debra Quinn from last fall.  Today, we’d like to introduce you to another ALS patient activist in our midst:  Tom Murphy, a PatientsLikeMe member since January 2011.  As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have

Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy Read More »

Raise Your Awareness of ALS (Lou Gehrig’s Disease)

3 Comments / ALS / By

May is ALS Awareness Month. To help spread the word about this progressive neurodegenerative condition, which affects approximately five out of every 100,000 people worldwide, we wanted to tell you a little bit about our patients with ALS (amyotrophic lateral sclerosis). Due to our founders’ personal experience with this disease, ALS was the very first

Raise Your Awareness of ALS (Lou Gehrig’s Disease) Read More »

Scroll to Top