You may remember our interview with ALS advocate Debra Quinn from last fall. Today, we’d like to introduce you to another ALS patient activist in our midst: Tom Murphy, a PatientsLikeMe member since January 2011. As part of the ALS Treat Us Now nonprofit group, Tom and several other ALS patients around the country have… Continue reading Meet ALS “Treat Us Now” Steering Committee Member Tom Murphy
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.
It’s World Kidney Day. How Are Your Kidneys?
Today is World Kidney Day, a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). Since 2006, World Kidney Day has been raising awareness of the importance of our kidneys to our overall health. For example, did you know that it’s our kidneys’ job to remove toxins… Continue reading It’s World Kidney Day. How Are Your Kidneys?
What Do You Know About Multiple Sclerosis?
March is National MS Education and Awareness Month (NMEAM), an initiative of the Multiple Sclerosis Foundation (MSF) to raise awareness for this chronic neurological disease affecting the brain, spinal cord and optic nerves. This year’s theme is “At Your Best with MS,” encouraging the more than 2.5 million people with MS worldwide to seek the… Continue reading What Do You Know About Multiple Sclerosis?
Rare Disease Day: Together, We Can Do More
Today is the fifth annual observation of Rare Disease Day, an international event recognized in more than 50 countries. (Learn about US activities here, including a day of lobbying on Capitol Hill for the ULTRA Act, which aims to stimulate the development of treatments for rare diseases.) What’s a rare disease, you ask? It’s a… Continue reading Rare Disease Day: Together, We Can Do More
A Peek at the February Newsletter for Members
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February 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… Continue reading A Peek at the February Newsletter for Members
E-Patient Dave’s Top Internet Resources
We first introduced you to E-Patient Dave – a well-known blogger, author and keynote speaker in the healthcare space – last summer. Given our similar views on many health matters, we see a lot of E-Patient Dave at the conferences and events we attend. Case in point, our President and Co-Founder Ben Heywood was on… Continue reading E-Patient Dave’s Top Internet Resources
Information Wants to Be Free
(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
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