ALS

Patients as Partners: John and David share their clinical trial experiences

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, …

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“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year. Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker. Back …

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Patients as Partners: Gus and Maria talk partnering with your caregiver

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how …

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A new precision medicine program for ALS patients

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1 Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be …

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“Technology is the cure”: An update with member Steve Saling (SmoothS)

Recently, we paid a follow-up visit to ALS member Steve Saling (Smooth S) to see what he’s been up to and talk about future plans. When we last spoke with him in 2012, Steve was using his expertise as an architect and his interest in technology to spearhead the ALS Residence Initiative (ALSRI), starting with the Steve …

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A year of milestones for Team Gleason – and they’re not slowing down.

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 …

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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 …

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“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 …

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