Once considered a rare disease, amyotrophic lateral sclerosis (ALS) has become a common condition. About 6,000 new cases of ALS are diagnosed each year, and approximately four to six people per every 100,000 are living with the disease. Also called Lou Gehrig’s disease, it’s a progressive illness that affects nerve cells in the brain and […]
Risk Factors for ALS Read More »
Your home is your sanctuary, but if you’ve recently been diagnosed with amyotrophic lateral sclerosis (ALS), it may feel like that sanctuary isn’t as safe as it used to be. As the illness progresses, it can become harder to move around your home and do the daily tasks you used to do. Because ALS is a
How to Adapt Your Living Space and Daily Activities for ALS Read More »
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
What can you do to challenge ALS in May? Read More »
All around the world, everyone impacted by a rare disease is taking everything day-by-day. But they can take each day hand-in-hand with the help and support of others. Today, on Rare Disease Day (RDD), EURORDIS (Rare Diseases Europe) and its global partners are calling on everyone to lend a hand to anyone affected by a
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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
What lies ahead – PatientsLikeMe member John shares his journey with ALS Read More »
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
Speaking up for hope during ALS Awareness Month Read More »
Back at the beginning of April, we launched a new blog series called Patients as Partners that highlights the results and feedback PatientsLikeMe members give to questionnaires on our Open Research Exchange (ORE) platform. This time around, we’re sharing the results of the Perceived Medical Condition Self-Management Scale (PMCSMS), a health measure that looks at
Today, healthcare professionals, research advocates and many people living with rare conditions are coming together to observe Rare Disease Day. It’s all about raising awareness for rare and genetic diseases, improving access to treatments and learning more about what exactly makes a condition rare. In the United States, a disease is considered rare if it
Uniting for hope on Rare Disease Day 2014 Read More »
May is amyotrophic lateral sclerosis (ALS) Awareness Month. As many out there know, PatientsLikeMe was inspired by the life experiences of Stephen Heywood, who was diagnosed with this serious neurological disease back in 1998. Stephen’s brothers (Ben and Jamie) made many attempts to slow the progression of his condition, but their trial-and-error approach just wasn’t
Raising awareness for amyotrophic lateral sclerosis Read More »
Our ALS Community recently broke the 5,000-member mark, making it the largest of its kind in the world as well as the ideal platform for expedited research. And that’s just what we’re working on. Since the community’s launch in 2006, we’ve conducted a number of research studies, both internally and in collaboration with leaders in
Share Your Data to Untangle ALS! Read More »
