Brian (Dunric) is a former game developer and has been living with ALS since 1998. Unable to find a local ALS support group where he lives in Lodi, CA, he discovered PatientsLikeMe in 2012. In a recent interview, Brian opened up about dealing with the uncertainty of his condition the best way he knows how… Continue reading “I try my best to make the most of each new day”– An interview with ALS member Brian
Category: ALS
Meet John from the PatientsLikeMe Team of Advisors
We’d like to introduce you to John, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Shortly after being diagnosed with ALS in January 2014, John decided to retire from his 37-year career in IT. His new focus? Learning everything he possibly can about his condition — and plenty of fishing. Fueled by what he… Continue reading Meet John from the PatientsLikeMe Team of Advisors
“Do not give up, find a reason to keep going.” – An interview with ALS member Lee
Humor and a passel of grandchildren keep Lee (slicky) going. He’s been living with ALS for nearly three decades and refuses to let his condition get the best of him. Now retired, he delights in his family and is very active in our forums – welcoming new members, doling out information and sharing his positive… Continue reading “Do not give up, find a reason to keep going.” – An interview with ALS member Lee
“I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa
Lisa (Ltbeauti) was studying to become a teacher in Richmond, VA, when she was diagnosed with ALS—the same type that affected both her sister and father. After joining PatientslikeMe in 2008, Lisa has made it her mission to stay proactive about her health and, like any good teacher, offer support and share her experience with… Continue reading “I feel as if I’ve been given more time to spread awareness.” – An interview with ALS member Lisa
Meet Gus from the PatientsLikeMe Team of Advisors
Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in… Continue reading Meet Gus from the PatientsLikeMe Team of Advisors
Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation
In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. Mary Ann Singersen also has family experience… Continue reading Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation
Recapping with our Team of Advisors!
Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team… Continue reading Recapping with our Team of Advisors!
What can you do to challenge ALS in May?
It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped, a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In… Continue reading What can you do to challenge ALS in May?
PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
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… Continue reading PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
“ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS
That’s what SuperScout likes to tell people when explaining her personal motto. She was diagnosed in 2009, and in a recent interview, she explained how she takes her life one day, and sometimes one hour, at a time. In her interview, she broke down what goes on during a typical visit to her ALS clinic,… Continue reading “ALS is not for sissies.” – PatientsLikeMe member SuperScout shares about her journey with ALS