6 posts tagged “Stephen”

#NotAlone: On PatientsLikeMe, no one is alone

Posted September 14th, 2015 by

Our co-founder Jamie Heywood calls it “the big idea my brother inspired.” A community of people learning from each other’s shared health experiences, connecting with people who get what they’re going through, and tracking their journeys to inform new research and help others understand what might work best for them. That is PatientsLikeMe, and that is what Stephen Heywood inspired.

Today, more than 350,000 members are part of the community, and through learning, connecting and tracking, they are #NotAlone.

Over the next few weeks, we’re launching the #NotAlone campaign that’s all about how members continue to learn from and support one another through life-changing conditions.

What can you expect to see from #NotAlone?
We’ll be featuring some inspirational stories to show how members have felt less alone on their journeys. Here’s a preview into the #NotAlone experiences of Letitia, Nola, and Geof:

  • After Letitia learned about an epileptologist on the site and discovered she was a perfect candidate for surgery, she’s been seizure free for 3 years.
  • When Nola’s multiple sclerosis kept her from accessing her shower, Gary, a member she connected with in the forum, stepped in to help from 3,000 miles away.
  • Geof uses Adderall to combat multiple sclerosis fatigue, but, three days before his prescription was up, his insurance company denied the claim. He turned to the community and everyone who had tracked their own experiences with Adderall.

How can you get involved?
Share your own #NotAlone stories – whether in learning, connecting or tracking. Visit the forum to chat about your experience or chime in on Facebook or Twitter using #NotAlone.

And don’t forget to continue adding your data and experiences on the site. Every piece of information can help change medicine for the better and show someone else that they are #NotAlone.

Share this post on Twitter and help spread the word.


What can you do to challenge ALS in May?

Posted May 4th, 2015 by

It’s been 23 years since the U.S. Congress first recognized May as ALS Awareness Month in 1992, and while progress towards new treatments has been slower than we’ve all hoped,  a lot has still happened since then. In 1995, Riluzole, the first treatment to alter the course of ALS, was approved by the FDA. In the 2000s, familial ALS was linked to 10 percent of cases, and new genes and mutations continue to be discovered every year.1 In 2006, the first-of-its-kind PatientsLikeMe ALS community, was launched, and now numbers over 7,400 strong. And just two short years later, those community members helped prove that lithium carbonate, a drug thought to affect ALS progression, was actually ineffective.

This May, it’s time to spread awareness for the history of ALS and share everything we’ve learned to encourage new research that can lead to better treatments.

In the United States, 5,600 people are diagnosed with ALS each year,2 which means that well over 100,000 have started their ALS journey since 1992. And in 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, was also diagnosed. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004. If you don’t know their family’s story, watch Jamie’s TED Talk on the big idea his brother inspired.

So how can you get involved in ALS awareness this May? Here’s what some organizations are doing:

If you’ve been diagnosed with ALS and are looking to connect with a welcoming group of others like you, join the PatientsLikeMe community. More than 7,000 members are sharing about their experiences and helping one another navigate their health journeys.

Don’t forget to keep an eye out for more ALS awareness posts on the blog in May.

Share this post on Twitter and help spread the word for ALS Awareness Month.


1 http://www.alsa.org/research/about-als-research/genetics-of-als.html

2 http://www.alsa.org/about-als/facts-you-should-know.html