PatientsLikeMe, the leading treatment and outcomes sharing website for people with life-changing diseases, is featured on the PBS news magazine Frontline’s website in conjunction with the April television airings of So Much So Fast. Described by Oscar-nominated directors Steven Ascher and Jeanne Jordan as “a black-humored cliffhanger of romance, guerrilla science and the redefinition of time,” So Much So Fast chronicles Stephen Heywood’s courageous battle with ALS (Lou Gehrig’s disease).
Frontline interviewed PatientsLikeMe co-founder, and Stephen’s brother, Benjamin Heywood about the inspiration for the company and the role it plays in patients’ lives. Below is an excerpt from the interview:
FL: Where did the idea for PatientsLikeMe come from?
BH: When we found out Stephen had ALS (Lou Gehrig's disease), his diagnosis set in motion a series of events that led to PatientsLikeMe. We were incredibly lucky as a family to have the resources we had to manage Stephen's illness. Through Jamie’s (James Heywood) work at ALS TDI, we had access to the best research, activist patients, top clinicians, and technology and treatments that could make a difference in Stephen's life.
To view the entire interview, go to http://www.pbs.org/wgbh/pages/frontline/somuchsofast/heywoods/ben.html.
PatientsLikeMe recently announced the upcoming launch of its Multiple Sclerosis and Parkinson’s communities to add to its existing vibrant ALS community. The company is currently recruiting diagnosed patients to be Charter Members of the new communities. Charter Members get an inside peek into the new community functionality and can help shape the experience for other patients. If you are interested in becoming a Charter Member for the Multiple Sclerosis or Parkinson’s community, please send an email to eval(unescape('%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%73%75%70%70%6f%72%74%40%70%61%74%69%65%6e%74%73%6c%69%6b%65%6d%65%2e%63%6f%6d%22%3e%73%75%70%70%6f%72%74%40%70%61%74%69%65%6e%74%73%6c%69%6b%65%6d%65%2e%63%6f%6d%3c%2f%61%3e%27%29%3b')).
Founded by three MIT engineers, brothers Benjamin and James Heywood and longtime friend Jeff Cole, PatientsLikeMe is the leading treatment and outcome sharing website for people with life-changing diseases. PatientsLikeMe launched its beta product in March 2006 specifically for ALS (Lou Gehrig’s disease) patients, inspired by founders’ brother Stephen Heywood, who recently passed away after an eight year battle with the disease.
PatientsLikeMe® (www.patientslikeme.com) is the leading online health community for patients with life-changing conditions. PatientsLikeMe creates new knowledge by charting the real-world course of disease through the shared experiences of patients with ALS, multiple sclerosis, Parkinson's disease, HIV, mood conditions (including depression, bipolar, anxiety, OCD and PTSD), fibromyalgia, chronic fatigue syndrome/myalgic encephalomyelitis, epilepsy and organ transplants. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world. PatientsLikeMe endeavors to create the largest repository of real-world disease information to help accelerate the discovery of new, more effective treatments.