“Jaci is blazing a path that hopefully will not just cure her but set a course of treatment for countless others.” – Lori Hermstad, mother.
February 14th is a significant day for the Hermstad family. On this day in 2011, Alex Hermstad lost her battle with ALS at age 17. On this same day exactly eight years later, Alex’s twin Jaci was diagnosed with the same rare, aggressive form of ALS that took her sister. Jaci got to work building a dream team captained by drug regulatory expert Dr. Lauren E. Black. The team included Jaci’s family, community, Project ALS, Drs. Neil Shneider and Robert Brown, Charles River Laboratories, and the FDA. Now, a year later, Jaci has received eleven doses of jacifusen, a new type of gene therapy named just for her. In this one year, Jaci has become a portrait of courage for the ALS community and beyond. Thanks to her advocacy, jacifusen was born, and will now be tried by others with the same genetic form of ALS.
In October 2019 at the Project ALS fall gala, Alex and Jaci’s mother Lori spoke of being overcome with “a sense of hope and faith that comes from [her] twin daughters: one who fought tirelessly for six years to lay the groundwork for future treatments, and the other who we hope fulfills the destiny of her sister’s love and sacrifice.” For the Hermstads, Valentine’s Day is not just another holiday – it’s a constant, indelible reminder of the sisters’ immense love and sacrifice. Today we honor Alex and Jaci and reflect on the significance of their story. They have fearlessly and fervently paved the way for so many others. They are making history.
Learn more about the collaboration between The ALS Association and Project ALS to fund an expanded access program for jacifusen at Columbia University.
The current issue of Neuroscience journal is dedicated to the staggering contributions to science made by longtime Project ALS Research Advisory Board Chair Thomas M. Jessell, PhD, before his death from the rare neurodegenerative disease progressive supranuclear palsy on April 28, 2019, at 67.