Genetic ALS: Discussing a difficult diagnosis

Perspective from Robert Bucelli, MD, PhD Dr. Robert Bucelli is a professor and neurologist at Washington University in St. Louis. He consults and cares for many people with ALS at the school’s world-renowned ALS Center. Dr. Bucelli is a paid consultant for Biogen and was compensated for this article.

A bipartisan team of U.S. lawmakers has reintroduced the ALS Better Care Act, a bill that aims to improve access to quality medical care for people with amyotrophic lateral sclerosis (ALS). The legislation was introduced in the House by Republican Brian Fitzpatrick of Pennsylvania and Democrats Jason Crow…

Last weekend, I left my husband, Todd, with a caregiver while I attended our daughter’s dance performance at Northern Michigan University. “Love Is A Burning Thing: A Johnny Cash Ballet” was the CO/LAB Dance Company’s tribute to Johnny Cash, featuring a number of his songs. The energy in…

Patient enrollment has reached the halfway mark in an ongoing expanded access program (EAP) for MN‑166 (ibudilast), Medicinova’s oral anti-inflammatory drug for the treatment of amyotrophic lateral sclerosis (ALS). EAPs, also known as compassionate use programs, are designed to help people with serious or life-threatening diseases receive experimental…

In the U.S., clinical trials for amyotrophic lateral sclerosis (ALS) do not include enough non-white patients and women to fully represent the disease’s landscape in the real world, a study found. This lack of representation of certain groups may prevent researchers from generalizing clinical trial findings to the overall…

Scientists have developed a way to grow motor neurons, the highly specialized nerve cells that are lost in amyotrophic lateral sclerosis (ALS), opening the door to new research avenues for treatment discovery. The new approach directs rare adult brain progenitor cells to become corticospinal-like neurons, a type of nerve…

After my late husband, Jeff, was diagnosed with ALS in the fall of 2018, I could not have managed without the help of other people, and he couldn’t have either. This is hard to write, but even harder to own. Asking for help used to be difficult for me.

A viral infection can trigger a neurological disease similar to amyotrophic lateral sclerosis (ALS) in mice with a specific genetic profile, providing evidence for how genetics and environment may interact to cause the disorder, according to a new study. Findings suggest that while a virus may be…

Three years after my husband Todd’s ALS diagnosis, a friend put me in touch with another family who had been dealing with the disease for about a year. I listened as the adult daughter told me how her mom, who had ALS, couldn’t move at all, and how her…

Partially lowering levels of the protein RAD23A can help nerve cells better handle toxic TDP-43 protein clumps, improving survival and function in a mouse model of amyotrophic lateral sclerosis (ALS), a study found. The approach reduced the buildup of misfolded proteins, restored the cell’s protein cleanup machinery, and slowed…