MND

PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations. Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those […]

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PatientsLikeMe Launches Virtual Trial for ALS Patients

Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful

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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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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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“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

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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

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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

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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

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