MND

“Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND

Those three words describe how PatientsLikeMe member Steve says he has adapted to life with motor neuron disease (MND). He was diagnosed with MND (also known as ALS) in 2007, and technology has helped Steve navigate the challenges of living with ALS while raising three children. He’s also made a video about his journey, called […]

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Subjects no more: what happens when trial participants realize they hold the power in clinical trials?

When I first became involved with online communities back in 2002, I moderated a small forum for patients with ALS/MND in the UK at King’s College Hospital to connect with one another, share tips and support, and to help our care center to serve them better. One area that remains controversial even to this day

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A Little More About Us: A Look Back at the Founding of PatientsLikeMe

“I got this call from my brother Stephen, and he said the news doesn’t look good. At that point, he’d been through enough processes to know what that meant – he had ALS. So I began this journey with my brother and my family…. We were thinking there had to be a way to make

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Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)

The research team is very proud of how our team has grown in 2010 and the impact we’ve made in the academic community.  In 2010 alone, PatientsLikeMe and our work were mentioned in scientific literature more than 133 times.  All of this is because of what you share with us. Yesterday, we highlighted some of

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PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin

The 20th International Symposium on ALS/MND took place (December 8th-10th) in Berlin, Germany. This is the 4th ALS Symposium attended by PatientsLikeMe, and certainly the most exciting in terms of new findings. The annual symposium is a tremendous opportunity for researchers from around the world to meet and share new developments – it’s the big

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A new gene for ALS: What sharing your genetics could mean for research

In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,

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