On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as company. Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease. Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage… Continue reading PatientsLikeMe Featured on Bloomberg TV
Category: ALS
How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
Want to connect with and learn from others with ALS? Join PatientsLikeMe Now! (It’s free) “Social media is the MOST important means of socialization, communication and education for patients and their caregivers today, particularly with a disease like ALS where our minds are still sharp and active inside our failing bodies. Sites like PatientsLikeMe, Facebook… Continue reading How Social Media Helped Me Adjust to My New Life: An ALS Patient Essay
The Joy of Being Helpful
Many patients with life-changing conditions report feelings of grief and guilt about no longer being able to do many of the things they did in the past. As a recent discussion in our forum revealed, however, patients are finding ways to reset their perspective and boost their self-esteem by focusing on what they are still… Continue reading The Joy of Being Helpful
PatientsLikeMe Researchers Score a Hat Trick
The term “hat trick” originated in 1858 after English cricketer HH Stephenson successfully bowled out three batsmen with consecutive bowls and he was presented with a hat to commemorate his feat. In June, PatientsLikeMe’s research team scored a hat trick of our own by publishing three new studies in scientific journals in just four days,… Continue reading PatientsLikeMe Researchers Score a Hat Trick
The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A native of Glasgow, Scotland, Graham Steel is a longtime “Guest Researcher Member” of PatientsLikeMe. Following the death of his brother Richard at the age of 33 from a rare condition known as variant Creutzfeldt-Jakob Disease (vCJD), Graham became involved in patient advocacy work, and most recently, in lobbying for open access to published scientific… Continue reading The Importance of Open Access: An Interview with Patient Advocate Graham Steel
A Peek at the June Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our June edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to… Continue reading A Peek at the June Newsletter for Members
Women’s Health Week: “It’s Your Time”
Ladies, we know your lives get busy. So why not pull out your calendar or smartphone right now and see if you’re due for a visit to your health care providers? You’ll be doing your part for National Women’s Checkup Day (observed today, Monday, May 14th), an annual event that’s part of National Women’s Health… Continue reading Women’s Health Week: “It’s Your Time”
Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes
How do you define a disruptive hero? Here is Hacking Work’s three-pronged filter: Disruptive because they are proving conventional wisdom wrong. Heroes because they are changing the rules of the game, for the better. Great because they helped to change us all for the better. Given these demanding criteria, we are pleased to announce that… Continue reading Jamie Heywood Is One of Hacking Work’s 100 Great Disruptive Heroes
The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Earlier this month, we told you about a new study showing that ALS patients reporting their health status over the Internet (using a rating scale known as the ALSFRS-R) is just as reliable as a trained nurse rating the patient’s score. Now, we’d like to share our interview with lead study author Dr. Thomas Meyer,… Continue reading The “Immense Benefits” of Online Health Reporting: An Interview with ALS Study Author Dr. Thomas Meyer
Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device
For an ALS patient, an eye gaze system – a type of augmentative speech device that translates eye movements into words – can make it possible to communicate with loved ones when speech is impaired or lost. But as animation studio owner Mick Ebeling found out, not every patient with advanced ALS has one. The… Continue reading Making the Impossible Possible: ALS Patient Tony “TEMPT ONE” Quan and the EyeWriter Device