Accidents happen, anywhere to anyone. Whether it’s from playing soccer or football, snowboarding, riding a bike, competing in synchronized swimming, slipping on ice or falling off of a ladder. In sports, even with the best safety procedures in place, there are still accidents. That’s why our partners at One Mind have started the #TreatBrainsBetter campaign.… Continue reading From our partners at One Mind: Zack Lystedt’s football story
Category: Patient Experiences
Meet Gus from the PatientsLikeMe Team of Advisors
Say hi to Gus, another member of your 2015-2016 PatientsLikeMe Team of Advisors. Gus is someone who’s been very competitive and focused, has always felt that there was nothing he couldn’t accomplish or overcome, and spreads positivity wherever he goes. So when he was diagnosed with familial ALS, positive SOD1 gene – unknown variant, in… Continue reading Meet Gus from the PatientsLikeMe Team of Advisors
“I am not a quitter, I never have been” – An interview with lung cancer member Jacquie
For Jacquie (Jacquie1961), a business owner and entrepreneur from New Mexico, 2013 was the worst year of her life – she’d lost two beloved pets to old age and then was diagnosed with lung cancer, which soon turned into colon cancer. After rigorous chemotherapy and the adoption of a new dog, Roman, Jacquie joined PatientsLikeMe… Continue reading “I am not a quitter, I never have been” – An interview with lung cancer member Jacquie
Epilepsy Awareness Month: The value in helping others
It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy. Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains: “I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic… Continue reading Epilepsy Awareness Month: The value in helping others
A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
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
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
“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor
Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life… Continue reading “I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor
The highs and lows of bipolar disorder
Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. Did you know bipolar disorder is a worldwide condition? In Australia there… Continue reading The highs and lows of bipolar disorder
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
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