Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

It’s time for another Patients as Partners post, and today, we’re happy to share the results of the Hallucinations and Parkinson’s disease questionnaire. In March 2014, more than 500 PatientsLikeMe members living with Parkinson’s disease (PD) took part in an Open Research Exchange (ORE) questionnaire about their condition. They worked with Dennis Chan and Ruth… Continue reading Patients as Partners: Hallucinations and Parkinson’s disease questionnaire results

Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

Just about a year ago, we teamed up with Sage Bionetworks and TED Fellow Dr. Max Little for an ongoing Parkinson’s disease (PD) project called the Patient Voice Analysis (PVA).   The big idea: combine data from two sources – phone-based voice recordings and patient reported data from PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS). Then,… Continue reading Open funding for open science to accelerate ALS research: An interview with Prize4Life CEO Shay Rishoni

2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys… Continue reading 2014 recap – a year of sharing in the PatientsLikeMe community

Getting to know our 2014 Team of Advisors – Lisa

A few weeks ago, we kicked off the “Getting to know our 2014 Team of Advisors” blog series with Dana, a PatientsLikeMe member from New Jersey that is living with bipolar II. And now, we’d like to introduce you to another member of the team – Lisa.  About Lisa (aka lcs) Lisa’s recent work experience… Continue reading Getting to know our 2014 Team of Advisors – Lisa

The Patient Voice- Parkinson’s member Ed shares his story

  Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with… Continue reading The Patient Voice- Parkinson’s member Ed shares his story

“I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Right at the start of April, you might have seen us post on the blog that it’s Parkinson’s (PD) Awareness Month. And to keep Parkinson’s awareness going strong all month long, we’re sharing a recent interview with PatientsLikeMe member Betty – aka dropsies to those in the community. She was diagnosed with Parkinson’s back in… Continue reading “I would just like to understand the ‘why’” – a conversation with PD community member dropsies

Making a difference for Parkinson’s disease in April

  After getting diagnosed with Parkinson’s disease (PD), PatientsLikeMe member Ed recalled “I needed to talk to people who had the disease, because only they knew what it was like…and could help me get through that initial shock… we can do much better fighting the disease as a group than we can as individuals.” And… Continue reading Making a difference for Parkinson’s disease in April

World Parkinson’s Congress recap

Here at PatientsLikeMe, we always look forward to hopping on the road and visiting you, the members who generously share personal health journeys so everyone can learn to live better, together. Recently, Molly (she’s part of your Community Team), Brad and Jim (part of our Partner Marketing team) drove north to Montreal to attend the… Continue reading World Parkinson’s Congress recap

Young professionals, students and patients gather to collaborate at 5th Parkinson’s Disease Summer School

The Parkinson’s Disease Summer School was founded in 2008 by Paul de Roos of the European Medical Students’ Association and Krzysztof Nesterowicz of the European Pharmacy Students’ Association. This year, the school is leaving its European roots and relocating to Montreal, Canada. Thirty participants from around the world will work in small teams to develop… Continue reading Young professionals, students and patients gather to collaborate at 5th Parkinson’s Disease Summer School

Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”

Last week we kicked off a new blog series featuring patient bloggers, and today, we’re pleased to present our second installment.  Please meet Steve Ploussard, a longtime PatientsLikeMe member who writes a blog about living with Parkinson’s disease (PD) called “Attitude & Fitness Wins.”  Steve decided that blogging was the perfect way to “come out”… Continue reading Spotlighted Blogger: Parkinson’s Patient Steve Ploussard of “Attitude & Fitness Wins”