Be the Story – Krabbe Diseases Newborn Screening
Welcome! We are glad you decided to read more about our campaign to spread awareness and advance education around Krabbe disease newborn screening. It’s vital to continue advocating for newborn screening across the USA. It’s proven that newborn screening for Krabbe disease allows families access to additional treatments when diagnosed early in the disease. Personal stories help drive our organization’s ability to encourage and foster change in each state. We ask that you consider sharing your story so one day, every child born in the USA will be given the opportunity to be screened early for Krabbe disease.
- New Hampshire
- New Mexico
Read some of the stories of other families impacted by Krabbe disease that have shared.
Please Note: If we receive more than one story for a state, we will utilize the story that was submitted first. If more than one story is submitted, we will reach out to let you know and ask if we can use your story for a future educational campaign. We’re forever grateful for each family willing to share their Krabbe disease story. Your personal stories will help us #curekrabbe!
Submit Your Story
The following questions will help us gather information about your journey and we will put together a story based on these answers. If you already have been featured somewhere or have your story written out, please share it with us! There's a place for that to be included. You will have the opportunity to review the final version before it is finalized. The goal for this project is to provide you with a fact sheet to use during advocacy, and we will use it in our efforts as well. Your voice matters. By sharing your story you will help improve access to Newborn Screening for Krabbe disease. We won't stop until all fifty states are screening!