If you hadn’t already heard about September being named Global Pulmonary Fibrosis Awareness Month by The Pulmonary Fibrosis Foundation (PFF), there are still two days for you to join in and help spread the word. What does “global awareness” mean? Pretty much just what it sounds like. It’s spreading awareness so that everyone around the world knows… Continue reading September is Global Pulmonary Fibrosis Awareness Month
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#NotAlone: On PatientsLikeMe, no one is alone
Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that… Continue reading #NotAlone: On PatientsLikeMe, no one is alone
Data donations make wishes come true
Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made… Continue reading Data donations make wishes come true
Tackling brain illness, together
Our partners at One Mind are advocating for a better understanding of the brain in general, and they’ve narrowed it down to a single statement: Our brains need answers. And that’s why they launched the “Needs” campaign story, underneath the hashtag #BrainsNeedAnswers. Think about it – what does your brain, or the brain of a… Continue reading Tackling brain illness, together
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
Throwback Thursday: Diabetes and stress
Just about two years ago, nearly 600 members of the PatientsLikeMe community completed a survey called the Diabetes Distress Scale (DDS), a 17-item questionnaire which measures the amount and types of problems diabetes can cause in a person’s life. And today, we’re throwing it back to the summary of the results. Here’s what Dr. William Polonsky,… Continue reading Throwback Thursday: Diabetes and stress
“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS
JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and… Continue reading “I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS
Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation
In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. Mary Ann Singersen also has family experience… Continue reading Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation
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
Caregivers and companions – PatientsLikeMe members talk about their service animals
Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview. Here’s what other members are sharing about their animals: “Just last night when I was having a rough dream… Continue reading Caregivers and companions – PatientsLikeMe members talk about their service animals