We hope you’ve learned something new this month, but we also hope that you’ve been moved to take action.
What can you do?
- Write/call your legislators. It only takes a few minutes, and it can make a huge difference.
- Donate to organizations like Hunter’s Hope so that they can continue funding the Leukodystrophy Care Network and supporting affected families.
- Read (and tell others about) my book, Even So, Joy: Our Journey Through Heartbreak, Hope, and Triumph. We want Tori’s story to continue to touch lives and it means so much when we hear about others reading it.
When Tori was diagnosed (February 2015), only two states screened for Krabbe: New York and Missouri. While this is progress, it is happening too slowly. In the meantime, babies are being born with Krabbe and they aren’t being screened. Lives are being lost – lives that should be given the option for transplant, but their ZIP code means they aren’t given that chance.