Back in January we introduced Cris, a member of the 2016-2017 PatientsLikeMe Team of Advisors living with ALS. She’s also a fierce patient advocate who’s participated in several clinical trials since her diagnosis. We recently caught up with her to learn about her experience with clinical trials and why access and awareness of clinical trials… Continue reading The record on research: Catching up with TOA member Cris
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Sleep and Daylight Saving: 3 ways to spring forward with confidence
Daylight Saving Time is here again. This Sunday, March 12th, clocks will move forward one hour from 2:00am to 3:00am. While the hour change may seem small, it can have a big impact on sleep and health. Want to hit snooze? You might feel sleepier than usual Monday morning since the average person sleeps 40… Continue reading Sleep and Daylight Saving: 3 ways to spring forward with confidence
ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
“This is the fastest enrolling trial in ALS history.” A brightly-colored blazer and the determination to make a difference for ALS patients are two of Dr. Rick Bedlack’s defining characteristics. Dr. Bedlack is a tenured associate professor of Medicine/Neurology at Duke University. He’s also the director of the Duke ALS Clinic that’s partnering with… Continue reading ALS Reversal: A chat with Duke’s Dr. Rick Bedlack
Going the distance for MS awareness
Meet Cheryl (CherylRunner), a marathoner living with MS. Since it’s MS Awareness Month, we sat down to chat with her about what she’s doing to raise awareness: running 7 marathons on 7 continents in a 12-month span. So far under her belt are South Africa, Argentina, Hawaii, Antarctica and Japan, and now she prepares to… Continue reading Going the distance for MS awareness
Lady Gaga reveals her struggle with PTSD
Musician Lady Gaga recently revealed in an open letter that she is living with PTSD. In the letter, posted to the Born This Way Foundation website, she discussed her struggle with the condition since being sexually assaulted as a teenager: “I have wrestled for some time about when, how and if I should reveal my… Continue reading Lady Gaga reveals her struggle with PTSD
Loud and clear: The patient voice on the ACA
Have you had chance to check out that poll where 2,000+ PatientsLikeMe members shared their views on the Affordable Care Act (“Obamacare”)? It was the largest patient poll on potential changes to the health care law, and several media outlets are now listening up. A recent CNBC article called “The human side of the Obamacare debate”… Continue reading Loud and clear: The patient voice on the ACA
Member Kimberly opens up about living with a rare disease
Today is Rare Disease Day 2017, and to raise awareness Kimberly (firefly84), a member of the 2016-2017 Team of Advisors, recently shared some of her experiences living with autonomic neuropathy, a rare disease: “Perhaps you’ve heard the saying ‘when you hear hoof beats, think of horses not zebras,’ but I am the zebra in that… Continue reading Member Kimberly opens up about living with a rare disease
“I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story
“Aletha Meyer Pinnow, 31 … died from depression and suicide on Feb. 20, 2016.” So begins the obituary that Eleni Pinnow penned about her sister for the Duluth (Minn.) News Tribune. The candid obit went viral and struck a chord with countless readers – in the mental health community and beyond – so Eleni followed… Continue reading “I think there needs to be a national-level dialogue about it”: Eleni Pinnow on depression, suicide and her sister’s story
Member Chris finds the uplifting side of type 1 diabetes
“I am the only 7-fingered diabetic record-holding powerlifter and motivational speaker you know!” Chris (ChrisRuden) says in his profile. He was born with two fingers on his left hand and a shorter left arm. He was bullied in high school, and he struggled with depression, alcohol and drug use. Chris was diagnosed with diabetes at… Continue reading Member Chris finds the uplifting side of type 1 diabetes
Communicating drug risks/benefits so the message really gets through
Last month, Jim, a member of the PatientsLikeMe Team of Advisors, was invited by Sally Okun, PatientsLikeMe’s VP Advocacy, Policy & Patient Safety, to present at the Drug Information Association (DIA) Pharmacovigilance Conference. He also led a lunch roundtable for drug risk/benefit communications experts. Sally, who also participated on the roundtable panel, says requests for… Continue reading Communicating drug risks/benefits so the message really gets through