Seven Mothers Unite in New York City to Solve Medical Mystery: ALS Geneticists at Columbia University Look to Mothers and Late Daughters for Clues to Rare Juvenile ALS
21 May 2018
On May 15th, Project ALS brought together seven mothers, who have all lost daughters to ALS, for a meeting in New York City. The mothers had previously interacted online, supporting each other through a Facebook group. Despite the emotional weight of the day, the meeting had an underlying sense of hope; Project ALS researches at Columbia University collected DNA samples and have begun to analyze them to find potential commonalities—a discovery that could shed light on the expression of ALS in younger patients.
ALS is typically seen as a disease affecting the middle-aged, however, that is not always the case. In these seven young women, aged 17-22, the disease manifested at a rapid pace. All of the daughters shared the same gene mutation. Researchers hope that by studying the DNA of these young women and their families they will be able to build model systems and develop new therapies for juvenile and other forms of ALS.
The day proved the seven mothers with a platform to share their stories, console, and support each other, as well as the ability to contribute to promising research.