After we got married, Todd and I bought an adorable, craftsman-style bungalow in a Milwaukee neighborhood. I believed living in the city would give me a better understanding of the issues faced by the families I served at an inner-city ministry, where I coordinated a tutoring program. Our next-door…
Desperate Places Don’t Always Come with a Choice
Mutations in the FUS gene, one of the most common causes of familial amyotrophic lateral sclerosis (ALS), increase the number of branches extending from the axons of motor nerve cells, so that no clear path exists for these neuronal “arms” to transmit information — in the form of electrical impulses —…
During my early childhood, I often played Chutes and Ladders. For those who are unfamiliar with the board game or have a foggy memory, the board is made up of 100 numbered squares. Beginning in the lower-left corner, players move a certain number of spaces, determined by…
People with amyotrophic lateral sclerosis (ALS) have higher blood serum levels of neurofilament light chain (sNfL) than do healthy people, a new study found. Its work also further supported sNfL’s usefulness as a marker of likely disease progression and outcomes, with higher concentrations indicating poorer survival. The research, “…
What does smiling have to do with ALS? Or happiness, contentment, or feeling positive? These expressions of our sense of well-being are important to those of us living with ALS. According to a study of 224 ALS patients, participants who had good emotional well-being experienced a slower progression…
Measuring lung function can help to predict overall disease progression in people with amyotrophic lateral sclerosis (ALS), a study suggests. “Classifying Amyotrophic Lateral Sclerosis Patients by Changes in Forced Vital Capacity: A Group-Based Trajectory Analysis” was published in the American Journal of Respiratory and Critical Care…
Rare diseases deeply affect not only the children who experience them, but also their healthy brothers and sisters, as their parents can attest. Two entries in November’s “Disorder: The Rare Disease Film Festival” will focus on what siblings go through, according to the San Francisco festival’s co-founder,…
Excessive energy demands to overcome gravity in nerve cells directed downward — such as those involved in the control of limb movements — may explain why amyotrophic lateral sclerosis (ALS) affects certain motor neurons while leaving others untouched, a study has proposed. As people age, nerve fibers disposed vertically…
Suffering Connects Us All
“So tell us your story,” we often ask people who come to help with Todd’s care. Those who show particularly deep compassion tend to have their own story of suffering, or they’ve loved and cared for someone who suffered. A stage IV cancer survivor. A disabled parent. A sibling who…
Disarm Therapeutics has announced the publication of two studies that further researchers’ understanding of the structure and function of SARM1, a key protein in cellular degeneration. The new data may aid in the design of therapies for multiple diseases, including amyotrophic lateral sclerosis (ALS). The findings were published in…
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