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… Continue reading “Perseverance, patience and acceptance” – PatientsLikeMe member Steve shares what it’s like to live with MND
Tag: MND
The Theory of Everything
Between the Ice Bucket Challenge and movies like “You’re Not You” (about a classical pianist who is diagnosed with ALS), there has been a ton of awareness going on for ALS, with many efforts focused on the personal stories of people living with the neurological condition. And this month, ALS is being spotlighted again in… Continue reading The Theory of Everything
Research, support and hope for spinal muscular atrophy
If you know PatientsLikeMe, you know that neurological conditions take us all the way back to our beginning. Stephen Heywood, the brother of our founders Ben and Jamie, was diagnosed with ALS back in 1998 at age 29. Today, almost ten years after PatientsLikeMe was created, thousands of members living with ALS and other neurological… Continue reading Research, support and hope for spinal muscular atrophy
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… Continue reading Subjects no more: what happens when trial participants realize they hold the power in clinical trials?
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… Continue reading A Little More About Us: A Look Back at the Founding of PatientsLikeMe
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… Continue reading Share and Compare: A PatientsLikeMe Year in Review (Part III – more R&D)
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… Continue reading PatientsLikeMe @ The 20th International ALS/MND Symposium in Berlin
Charting the course of PLS and PMA
Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy (PMA) are two rare variants of the disease ALS. Normally, ALS affects the upper motor neurons in the brain and spinal cord, as well as the lower motor neurons that send signals from the spinal cord directly to muscles. PLS and PMA are different because PLS only… Continue reading Charting the course of PLS and PMA
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,… Continue reading A new gene for ALS: What sharing your genetics could mean for research
ALS Symposium 2008: New features for ALS patients
This blog post is the second in a series from our attendance at the 19th International Symposium on ALS/MND in Birmingham UK in November 2008. When PatientsLikeMe attended the previous ALS/MND Symposium in Toronto Canada in December 2007, I was given a platform presentation to show the assembled clinicians, scientists and researchers what we had… Continue reading ALS Symposium 2008: New features for ALS patients