09 Oct Woman aims to end generations of loss from ALS
MADISON, Wis. — For seven generations — as far back as she can track — someone in Michelle Francis’ family has died from a hereditary form of amyotrophic lateral sclerosis, or ALS.
Using genealogy and research from family members, she has documented the names and faces of many of them, 65 in total; a poster she created shows many of their faces to the world.
Though all forms are rare, the disease was made common in the minds of many from the life of Lou Gehrig, who died of a version of the disease, and the “Ice Bucket Challenge” internet sensation in 2014 that raised millions of dollars for ALS research.
Francis and her family have an ultra-rare version of ALS caused by a mutation in the superoxide dismutase 1, or SOD-1, gene that causes the gene to create a toxic protein that forces motor neurons to degenerate, which leads to the muscle weakness for which the disease is known. Patients with all forms of ALS tend to only live a few years after symptoms present.
Francis, who lives in Rockford, Ill., was diagnosed in June 2019 in her late 40s and has been living with the disease for about four years. She first started noticing cramps in her feet and leg pain, but after a year or so the disease progressed to cause the loss of the use of her legs. She now uses a wheelchair but still can transfer herself from the chair. Read More…