Debra Quinn’s father, sister, aunt, grandmother and great aunt all passed away from ALS, and in 2009, she was diagnosed with ALS herself. This hereditary form of the disease is called familial ALS (fALS). After the loss of her younger sister in 2007, Debra decided that she could no longer stay silent.Today, she is “the… Continue reading I Will Not Be Quiet: An Interview with ALS Advocate Debra Quinn
Tag: familial ALS
FALS Patients Like You: An Interview with Samperio
Today, more than 3,600 people with ALS are sharing their health data and experiences with patients like them. Recently, we announced our new genetic search engine for ALS patients, designed to help members find others like them, right down to the molecular level. With 10% of all newly diagnosed ALS patients joining PatientsLikeMe, there are… Continue reading FALS Patients Like You: An Interview with Samperio
Announcing the PatientsLikeMe ALS Genetics Search Engine
This month marks the 3-year anniversary of our flagship ALS community. While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just… Continue reading Announcing the PatientsLikeMe ALS Genetics Search Engine
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