5 posts tagged “ALSA”

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


Speaking up for hope during ALS Awareness Month

Posted April 28th, 2014 by

May is just a few days away, and we wanted to get a jump-start on spreading the word for Amyotrophic Lateral Sclerosis (ALS) Awareness Month. As many out there might know, PatientsLikeMe was founded on the life experiences of brothers Stephen, Ben and Jamie Heywood. In 1998, Stephen was diagnosed with ALS and his brothers went to work trying to find new ways to slow his progression. But their trial and error approach just wasn’t working, and so they set out to find a better way. And that’s how in 2004, PatientsLikeMe was created. If you don’t know the story, you can watch the feature documentary of the family’s journey, called “So Much So Fast.”

ALS is considered a rare condition, but it’s actually more common than you might think – in the United States, 5,600 people are diagnosed with ALS each year, and as many as 30,000 are living with the condition at any given time.1 ALS affects people of every race, gender and background, and there is no current cure.

Even before PatientsLikeMe, Jamie started the ALS Therapy Development Institute (ALS TDI), an independent research center that focuses on developing effective therapeutics that slow and stop ALS. Now, it’s the largest non-profit biotech solely focused on finding an effective therapy for ALS. And on May 3rd, “The Cure is Coming!” road race and awareness walk will be held in Lexington Center, MA, to help raise funds for ALS TDI. There’ll be a picnic lunch, cash prizes for the road race winners and live music. Last year, over $110,000 was raised for ALS TDI – if you’re in the neighborhood, join the race today.

Also, the ALS Association (ALSA) sponsors several events during May, and this year, you can:

Back in January, we shared a special ALS infographic on the blog – the PatientsLikeMe ALS community was the platform’s first community, and now, it’s more than 6,000 members strong. If you’ve been diagnosed with ALS, there’s a warm and welcoming community on PatientsLikeMe waiting for you to join in. Ask questions, get support and compare symptoms with others who get what you’re going through.

Keep an eye out for more ALS awareness posts on the blog in May, including an interview with one of our ALS members.

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

 


1http://www.alsa.org/about-als/facts-you-should-know.html