USO of Indiana Five Star Gala
Saturday, September 14th, 2019
The Westin Indianapolis
By: Cindy Kirchhofer State Representative
A Hoosier family’s struggle will help save the lives of others. Bryce Clausen was a one-year-old who was diagnosed with Krabbe, a rare genetic disease, and recently passed away. His difficult journey and shortened life highlight the need to screen newborns for the disease.
There is no cure for Krabbe, but those diagnosed and treated early have better chances of living longer, healthier lives. Once symptoms appear, it is too late for treatment. Bryce was not screened at birth, and his diagnosis came only after symptoms appeared.
In addition to Krabbe, the new law I supported also adds Pompe disease and Hurler syndrome to Indiana’s newborn screening panel. This was the first bill signed into law by Gov. Eric Holcomb this session.
Our hearts ache for Bryce and his family who bravely shared their story to help save others. The Clausen’s are true heroes who turned their struggle into meaningful change.
In addition to pushing for this legislation, the Clausen’s are raising money to sponsor a theme room in Bryce’s name at the Peyton Manning Children’s Hospital. To learn more about Bryce’s battle and support their efforts, click here.