Three years ago, we posted a piece on Steve Gleason, former NFL player for the New Orleans Saints. Diagnosed with ALS in 2011, Steve has made it his mission to spread awareness and advocacy. Since then, Team Gleason has been hard at work to improve the lives of those living with ALS and 2015 proved… Continue reading A year of milestones for Team Gleason – and they’re not slowing down.
Category: ALS
ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
Meet Cathy (Catrin), who became a caregiver for her husband after he was diagnosed with bulbar onset ALS in January of 2015. As she learns to manage the dual roles of wife and caregiver, she has turned to the PatientsLikeMe community for help, encouragement and hope. We took time to connect with her recently and… Continue reading ALS Blog: “Hope makes us strong.” – An interview with ALS caregiver Cathy
“I try my best to make the most of each new day”– An interview with ALS member Brian
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
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
Your data doing good: The Lithium study
During #24DaysofGiving this December, we’re highlighting all the good your health data donations are doing. And this time, we’re starting at the beginning. As you probably know already, PatientsLikeMe launched its first community in 2006 for people living with ALS, also known as Lou Gehrig’s disease. Two years later, we had an amazingly engaged and… Continue reading Your data doing good: The Lithium study
Gus’s story
Last month, we introduced Gus, a member of your 2015-2016 Team of Advisors living with ALS. Here he talks about his hope that the data he donates will help not just one person – but many. Here’s more of his story: You can see how much good data can do. During the month of… Continue reading Gus’s story
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