From our partners and friends at the Schwartz Center for Compassionate Healthcare. In 2013, Adrianne joined the Schwartz Center in honoring the caregivers who saved her life after she was injured in the Boston Marathon Bombing, including a special thank you to Jeff Kalish, MD, of Boston Medical Center who performed her surgeries. Research shows… Continue reading Compassion for all: Adrianne shares how friendship grew from the life-altering Boston Marathon Bombing
Tag: PatientsLikeMe
A bold choice to fight epilepsy
As originally seen on the Tampa General Hospital News Center website It was scary enough for Letitia Browne-James’ parents to witness their child’s epileptic seizures. But they were also frightened when a doctor suggested brain surgery for their 12-year-old. “My parents said ‘no way,’” Browne-James said. “It was a very scary thought.” They tried medications,… Continue reading A bold choice to fight epilepsy
Making sure conferences are “Patients Included”
Picture this: you’re a medical professional and are about to open the doors to a conference you’ve spent years pulling together. You’ve booked your venue, have your sponsors lined up, got top headliners to give keynotes, picked your Twitter hashtag and have invited every industry pro to be a part of the event. In walk… Continue reading Making sure conferences are “Patients Included”
Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power
Just about a year ago, PatientsLikeMe’s Paul Wicks, PhD, Vice President of Innovation, wrote a blog post about what happens when trial participants realize they hold the power in clinical trials. He began his early experiences with ALS patients and clinical trials, but then fast-forwarded to how PatientsLikeMe members have replicated a clinical trial, started… Continue reading Throwback Thursday: Paul discusses what happens when trial participants realize they hold the power
Update and results – the Patient Voice Analysis study
About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey
Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
FamilyWize Community Service Partnership is committed to helping improve the health and well being of individuals and communities. High-cost prescription medications can be the cause of financial stress for uninsured or under-insured consumers. In fact, cost is the number one reason people do not take their prescribed medications, which impacts the short-term and long-term health… Continue reading Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent… Continue reading PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
PatientsLikeMe study monitors walking activity in people with MS
Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS… Continue reading PatientsLikeMe study monitors walking activity in people with MS
Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership
AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President,… Continue reading Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership