(This post has been repurposed from an article written by PatientsLikeMe’s Paul Wicks for the scientific journal Clinical Investigation.) But when it comes to clinical trials, can we afford to let it be? “Information (or data) wants to be free” – so goes the mantra of hackers and data activists. In the past this meant… Continue reading Information Wants to Be Free
Category: Conditions
Living with a health condition? On the PatientsLikeMe blog, find helpful health information and patient stories about being diagnosed, trying different treatments, and living day-to-day with a chronic condition.
Have a Heart Today. Become a Donor.
February 14th is Valentine’s Day. But it’s also National Donor Day. Started in 1998 by the Saturn Corporation and United Auto Workers in cooperation with the US Department of Health and Human Services (HHS), this annual event is focused on five points of life: organs, tissues, marrow, platelets and blood. All of these can be… Continue reading Have a Heart Today. Become a Donor.
NFL Player Steve Gleason’s Inspiring ALS Story
Did you catch the pre-game show before Sunday’s Super Bowl XLVI? If not, you missed a beautiful NBC piece about Steve Gleason, who spent seven seasons as a safety with the New Orleans Saints. Diagnosed with ALS a year ago, Gleason now walks with a cane, and his speech has been impacted. The new father… Continue reading NFL Player Steve Gleason’s Inspiring ALS Story
Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk
Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive? One of the speakers to take a crack at that… Continue reading Thriving Against Expectations: Ben Heywood’s Moving TEDx Cambridge Talk
Today’s Photo: Texans in Motion for ALS
Please meet ALS patient alsgirl (front and center in the wheelchair), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Dallas, Texas. A longtime PatientsLikeMe member who is part of the ALS Public Registry, alsgirl has been living with this degenerative disorder – also known as Lou Gehrig’s disease – for… Continue reading Today’s Photo: Texans in Motion for ALS
Our Patients’ Hopes, Thoughts and Resolutions for 2012
Many people look at a new year as a fresh start – a chance to begin new routines, eliminate bad habits and shift priorities. But not everyone believes in making resolutions. Here are several different patient perspectives on approaching the new year: “In 2012, I will make daily exercise a priority. Research reveals it is the… Continue reading Our Patients’ Hopes, Thoughts and Resolutions for 2012
Today’s Photo: A Sea of Bright Blue in Motion
Please meet ALS patient iceberg (front right), who led a PatientsLikeMeInMotion-sponsored team at the 2011 Walk to Defeat ALS in Western Pennsylvania. We count at least 25 bright blue PatientsLikeMeInMotion t-shirts worn by the team (called “Hrezo’s Heroes”), making this one of the biggest groups we’ve sponsored! Congrats to iceberg and all of our PatientsLikeMeInMotion-sponsored… Continue reading Today’s Photo: A Sea of Bright Blue in Motion
Holidays Wishes from PatientsLikeMe to You
The holidays are a time for thinking about everything you hope and wish for in the coming year. They’re also a time for appreciating everything you already have. As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team. “I wish for every patient and family… Continue reading Holidays Wishes from PatientsLikeMe to You
Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published
Last April, we had the honor of presenting the results of our epilepsy survey at the American Academy of Neurology (AAN) Annual Meeting. In some of the key takeaways, we shared that 55% of respondents consider PatientsLikeMe “moderately or very” helpful in learning about the type of seizures they experience. 45% found it useful for… Continue reading Open Access for All: PatientsLikeMe’s Epilepsy Survey Results Now Published
A Peek at the December Newsletters for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our December edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to… Continue reading A Peek at the December Newsletters for Members