There’s a greater sense of awareness around ALS lately. The IceBucketChallenge really shined a spotlight on a condition that many have heard of, but maybe not that many really understand. (If you missed it, see everyone here at PatientsLikeMe taking on the challenge, and what Steve, an ALS community member, thinks about it. So it… Continue reading You’re Not You
Tag: ALS
Jamie delivers keynote presentation at DIA 2014
Our co-founder, Jamie Heywood, recently traveled to San Diego to receive the Drug Information Association’s (DIA) 2014 President’s Award for Outstanding Achievement in World Health. With the award in his hand and speaking to everyone who was attending the event, he accepted it on behalf of the quarter million PatientsLikeMe members (this is for all… Continue reading Jamie delivers keynote presentation at DIA 2014
“Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
Ice + water + video camera = a viral ALS awareness campaign that has spread over social media and the news like wildfire. Millions of dollars has been raised for ALS research while more and more, people are learning about this neurological condition. Recently, PatientsLikeMe member Steve (who has been living with ALS since 2009)… Continue reading “Bang for the buck.” PatientsLikeMe member Steve shares about his experiences with ALS and the IceBucketChallenge
“Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
There’s been a lot of awareness going on for ALS with the IceBucketChallenge, and to help keep the momentum going, PatientsLikeMe member Dee (redrockmama) shared her personal experiences with the neurological condition. She made the decision to install a feeding tube early in her journey, and now she is managing her weight through overnight… Continue reading “Speak up!” PatientsLikeMe member Dee speaks about her journey with ALS
Putting the spotlight on ALS
If you follow PatientsLikeMe on Twitter or Facebook, you might be wondering why our staff decided to dump ice water all over their heads this past week. Well, here’s what’s up: it all about raising awareness for ALS. It began in 2012, when local Boston College alumnus Pete Frates was diagnosed with amyotrophic lateral sclerosis… Continue reading Putting the spotlight on ALS
“In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
For those of you who don’t know Steve, you should! For years he worked as a successful landscape architect designing urban public spaces. In 2006, he was overlooking the design of the historic Boston Common when he was diagnosed with ALS. Steve retired from that career path and quickly started another – creating the Steve… Continue reading “In my own words” – PatientsLikeMe member Steve writes about his journey with ALS
Food for thought: June edition
For the past couple months, we’ve been sharing about different members’ favorite foods and recipes, and we’re keeping it going with multiple sclerosis members discussing the pros and cons of smoothies, ALS patients talking about getting sleepy after steak, and the fibromyalgia community sharing about cutting foods out of their diets. MS forum thread: Nutrition… Continue reading Food for thought: June edition
If you could share one thing… -Steven’s inspiring answer
PatientsLikeMe ALS member Steven (sheronemus) was diagnosed with ALS back in 2005, and we recently had the chance to ask a few questions about his experiences. Steven spoke about his initial anger and disbelief, the clarity and focus he developed afterwards and how technology helps him participate in many events he didn’t expect to witness.… Continue reading If you could share one thing… -Steven’s inspiring answer
Food for thought: May edition
Just last month, we shared about some of our community members’ favorite foods, and about how what they choose to eat can impact the conditions they live with every day. We heard from the fibromyalgia, type 2 diabetes and multiple sclerosis communities – and to keep the series going, we’ve got three new hot, or… Continue reading Food for thought: May edition
What lies ahead – PatientsLikeMe member John shares his journey with ALS
It’s already the second week of ALS Awareness Month, and as promised, we’ve got an interview to share with John (johnpp) – a PatientsLikeMe member that has been living with ALS since his diagnosis in the spring of 2013. John talks about a new sense of urgency that he feels along with his reaction and… Continue reading What lies ahead – PatientsLikeMe member John shares his journey with ALS