A Typical Day in My Life With ALS

“Woke up, fell out of bed, dragged a comb across my head.” These are the first two lines of the bridge that Paul McCartney contributed to The Beatles’ song “A Day in the Life,” the…

Eurordis, a Paris-based coalition of national rare disease associations across Europe, hosted its first all-virtual conference, bringing some 1,500 delegates from 57 countries together online during the COVID-19 pandemic. The 10th European Conference on Rare Diseases & Orphan Products (ECRD2020) — which was set for May 14–15 in…

The clear, colorless liquid that fills and surrounds the brain and spinal cord may spread toxic protein aggregates from one nerve cell to others among people with amyotrophic lateral sclerosis (ALS), a study in mice suggests. When repeatedly infused with the cerebrospinal fluid (CSF) from ALS patients, animals…

Here’s a fun challenge. In the spirit of celebrating ALS Awareness Month, I invite you to play my A-L-S word game. It’s a simple game I created to help me cope with the stress and anxiety of being newly diagnosed with ALS. It goes along with the strategies…

Exposure to a neurotoxic molecule produced by blue-green algae seems to raise a person’s odds of developing amyotrophic lateral sclerosis (ALS), particularly for those under 65, a population-based study from Italy shows. The research examined individuals who lived close to freshwater systems — a river, lake, even a…

Rare variations in the TET2 gene seem to double a person’s risk of multiple neurodegenerative diseases, including amyotrophic lateral sclerosis (ALS), frontotemporal dementia (FTD), and Alzheimer’s disease, according to a recent study. This gene codes for a protein involved in removing small chemical groups from DNA…

NurOwn, a cell-based therapy that protects and helps repair nerve cells, also may be able to curb the damaging brain inflammation that contributes to the progression of amyotrophic lateral sclerosis (ALS), recent findings suggest. Researchers believe this newly-found potential may extend the…

As I waited for the postmaster to bring my package to the counter, I tried to think of what I had ordered. Nothing came to mind. He set the brown box on the counter and said, “Here you go,” through his fabric mask. The package, measuring about 12 inches by…

ProMIS Neurosciences announced its program for amyotrophic lateral sclerosis (ALS) is advancing, and scientists were able to generate a specific type of antibody against toxic TDP-43 protein clumps — a hallmark of this disease — that continuously damage nerve cells. These antibodies, called intrabodies because they…

The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient’s physical and mental health, supply of treatments, and access to healthcare, among other…