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. Click the button to learn more about Hayley's ALS story.
Katherine Serynek
Katherine was diagnosed with ALS in Spring 2016. She carried a mutation in the FUS gene. Click the button to learn more about Katherine's ALS story.
Hanna was diagnosed with ALS in the fall of 2016. She carried a mutation in the FUS gene. Click the button to learn more about Hanna's ALS story.
Hanna Lambert
Sierra Bland
Sierra was diagnosed with ALS in the winter of 2015. She carried a mutation in the FUS gene. Click the button to learn more about Sierra's ALS story.
Haley Stevens
Haley was diagnosed with ALS in 2008. She carried a mutation in the FUS gene. Click the button to learn more about Haley's ALS story.
Benjamin Merck
Ben was diagnosed with ALS in October 2019. He carried a mutation in the FUS gene. Click the button to learn more about Ben's ALS story.
Alex Hermstad
Alex was diagnosed with ALS in 2010. She carried a mutation in the FUS gene. Click the button to learn more about Alex's ALS story.
Jaci Hermstad
Jaci was diagnosed with ALS in February 2019. She carried a mutation in the FUS gene. Click the button to learn more about Jaci's ALS story.
Whitney was diagnosed with ALS in August 2008. She carried a mutation in the FUS gene. Click the button to learn more about Whitney's ALS story.
Whitney Baird
Lindsey Stoeffen
Lindsey was diagnosed with ALS in July 2018. She carried a mutation in the SOD1 gene. Click the button to learn more about Lindsey's ALS story.
Stephen Nacy
Stephen was diagnosed with ALS in May 2016. He carried a mutation in the FUS gene. Click the button to learn more about Stephen's ALS story.
Eitan Jacobi
Eitan was diagnosed with ALS in 2014. He carried a mutation in the FUS gene. Click the button to learn more about Eitan's ALS story.
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.
