Science

Talking brain donation with Dr. Deborah Mash

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below. What led you to study diseases of the brain?  The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease. How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science? Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to …

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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 the research work we’ve done in 2010 across our four newest communities.  Today, we’ll highlight our older communities.  Below is also a highlights reel of some of this work. HIV Throughout 2010, we discussed the goal and benefits to measuring your quality of life (QoL). This concept of measuring QoL started in our HIV Community at the end of 2009. Earlier this year in a blog and podcast, Researcher Michael Massagli Ph.D. discussed some of the insights that are being shared by HIV patients through the QoL survey. For instance, we found that the average physical, mental and social well-being score of patients with a CD4 count below 200 is significantly lower than for those of you with a count above 200. Parkinson’s Disease The Parkinson’s Community has always excelled in reporting their health status through the Parkinson’s Disease Rating Scale (or PDRS). When answering …

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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, FALS). Until today, there was only one major causative gene that we knew about, called SOD1, which accounted for 20% of familial cases. Today’s new discovery of the gene FUS (also known as ALS6) accounts for an additional 3-5% of familial cases and was the result of an international collaboration between scientists in Boston, London, and Sydney. This is very exciting for research because the more we know about what causes ALS, the better our chances of finding an effective treatment through better understanding of the pathways involved in motor neuron degeneration. Here at PatientsLikeMe, we’ve recently upgraded our ALS platform to capture data on familial ALS patients’ known genetic mutations. The goal is to help familial ALS patients find another patient like them, and to enhance understanding of the phenotype of each mutation, e.g. if different types of mutation cause a faster or slower …

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