Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Tag: Parkinson’s Disease
PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing… Continue reading PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Talking Brain Donation with Dr. Deborah Mash
Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very… Continue reading Talking Brain Donation with Dr. Deborah Mash
Food for thought: August (diet) edition
Many mothers have told their children “you are what you eat,” but some PatientsLikeMe members have taken that idea one step further and are using their diets to try and manage the symptoms of their conditions. People have been sharing about everything from gluten-free to vegan diets – check out what some people said in… Continue reading Food for thought: August (diet) edition
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
“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
PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease CAMBRIDGE, Mass.— February 5, 2014—PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD… Continue reading PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter
PatientsLikeMe member Bev Ribaudo (“YumaBev”) was diagnosed with Parkinson’s disease (PD) at age 47, but it hasn’t dampened her flair for comedy. “Humor comes naturally to me, and a little disease like Parkinson’s can’t take it away,” she says. In fact, her condition has given her a new purpose: entertaining other “Parkies” with her deep… Continue reading Spotlighted Author: Parkinson’s Humorist Bev Ribaudo on Dispensing Laughter
Life with Parkinson’s Disease: What We’ve Learned
On Tuesday, our interview with blogger Steve Ploussard of “Attitude & Fitness Wins” revealed how one person is managing his Parkinson’s disease (PD). Today we take a closer look at this progressive neurological condition using the data and experiences shared by our 5,920 PD members. Taking a look at the makeup of our PD community,… Continue reading Life with Parkinson’s Disease: What We’ve Learned
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”