Navigating ALS with Children in Tow

My heart ached for my kids after my husband, Todd, was diagnosed with amyotrophic lateral sclerosis (ALS). Isaac was 9 months old and Sara was 4. How would ALS affect them? I had no idea how to help them navigate our future. A year after Todd was diagnosed, I…

The Chan Zuckerberg Initiative (CZI) has awarded I AM ALS a $453,000 grant to develop ways to connect amyotrophic lateral sclerosis (ALS) stakeholders and the public in the fight against ALS and other rare disorders. As part of CZI’s wider effort to accelerate investigations into rare diseases,…

Shortly after emerging from the stupor that culminated in my ALS diagnosis, I was consumed with a zeal to learn all that I could about the millstone dangling heavily from my neck. Toward that end, I read everything I could lay my eyes upon, though some material was…

Mutations in the annexin A11 gene (ANXA11), seen in familial amyotrophic lateral sclerosis (ALS) and frontotemporal dementia, disrupt the transport of key RNA molecules inside neurons, recent research shows. The annexin A11 protein is a molecular adaptor required for RNA molecules, essential for neurons’ function, to hitchhike on lysosomes…

Like many who live with ALS symptoms, I rely on a rollator. But when out and about and covering longer distances, I use a mobility scooter. My scooter is perfect, and I feel comfortable and confident going almost anywhere with it. Recently I crossed that almost off the list.

In contrast to what is often assumed, new research suggests that clumps of the protein TDP-43 — a hallmark of amyotrophic lateral sclerosis (ALS) — actually protect nerve cells rather than harm them. If this finding confirmed in future studies, it could hugely impact how ALS and other neurodegenerative diseases…

The release of fragmented or dysfunctional mitochondria — a cell’s powerhouse — by immune and structural cells inside the central nervous system is a critical step that triggers neuron death and the progression of human neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS), a study shows.

What is ALS? Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive neurological disorder that affects the nerves that control muscle movement. Patients are generally diagnosed between ages 55–75. Symptoms can range from mild to very severe and may progress at different rates for different…

Next month’s annual conference of the National Organization for Rare Disorders (NORD) in Washington, D.C., couldn’t come at a better time, says Marshall Summar, MD, chairman of NORD’s board of directors. “The pace of discovery in rare diseases has gone from brisk to hypersonic,” Summar told Bionews Services, publisher…

After gathering input from patients, researchers, and advocates, the U.S Food and Drug Administration (FDA) has released new guidance on the development of therapies for amyotrophic lateral sclerosis (ALS). Among its recommendations, it is advising more communication with companies early on in the product development process, access to…