Pediatric & Juvenile ALS Awareness
Children get ALS, too.
Our ALS Stories
Read about these extraordinary young people and their bravery and courage in the face of a terminal disease. Help us spread awareness to find a cure in their memories.
Hayley Steffen
Hayley was diagnosed with ALS in April 2017. She carried a mutation in the FUS gene. Learn more about Hayley's ALS story here.
Katherine Serynek
Katherine was diagnosed with ALS in Spring 2016. She carried a mutation in the FUS gene. Learn more about Katherine's ALS story here.
Hanna was diagnosed with ALS in the fall of 2016. She carried a mutation in the FUS gene. Learn more about Hanna's ALS story here.
Hanna Lambert
Sierra Bland
Sierra was diagnosed with ALS in the winter of 2015. She carried a mutation in the FUS gene. Leare more about Sierra's ALS story here.
Haley Stevens
Haley was diagnosed with ALS in 2008. She carried a mutation in the FUS gene. Learn more about Haley's ALS story here.
Benjamin Merck
Ben was diagnosed with ALS in October 2019. He carried a mutation in the FUS gene. Learn more about Ben's ALS story here.
Alex Hermstad
Alex was diagnosed with ALS in 2010. She carried a mutation in the FUS gene. Learn more about Alex's ALS story here.
Jaci Hermstad
Jaci was diagnosed with ALS in February 2019. She carried a mutation in the FUS gene. Learn more about Jaci's ALS story here.
Whitney was diagnosed with ALS in August 2008. She carried a mutation in the FUS gene. Learn more about Whitney's ALS story here.
Whitney Baird
Lindsey Stoeffen
Lindsey was diagnosed with ALS in July 2018. She carried a mutation in the SOD1 gene. Learn more about Lindsey's ALS story here.
Stephen Nacy
Stephen was diagnosed with ALS in May 2016. He carried a mutation in the FUS gene. Learn more about Stephen's ALS story here.
Eitan Jacobi
Eitan was diagnosed with ALS in 2014.
He carried a mutation in the FUS gene. Learn more about Eitan's ALS story here.
information for families and patients who have a suspected or confirmed diagnosis of pediatric or juvenile ALS.
Resources and support for families who children have been diagnosed with pediatric or juvenile ALS.
