Books for children, youth & families
In collaboration with families, healthcare professionals, and global partners we create books and materials to help children and families better understand neurological conditions and the caregiving journey. These resources are designed to open up conversations, build knowledge, and provide comfort.
Children and youth around the world and across conditions ask the same questions -
How do I talk to my friends about caregiving?
How can I help my person?Â
Parents also need support in how and when to talk to their children about illness & conditions.
These resources address the questions head -on, providing an opportunity for children, youth, families, and schools to explore and support all those impacted by a neurological condition.
Don't see a language that meets your needs?
We are always looking for volunteer collaborators to help translate materials. If you or your organization has capacity, we are more than happy to work with you to translate our materials into other languages for your community!
Supporting Young Caregivers in School
An estimated 5.4 million youth in the U.S. care for a loved one at home. This guide helps educators and school staff support caregiving students whose responsibilities may impact attendance, focus, and well-being. With practical strategies and a trauma-informed lens, it offers ways schools can be safe, understanding spaces—where young caregivers are seen, supported, and given the chance to just be kids.
ALS Library
Check out our full ALS/MND library covering topics from parenting guides to talking to kids about genetics.
Real Kids Talk About ALS: Feeling Normal, Sad, & Different
FAMILIES AND ALS: A GUIDE FOR TALKING WITH AND SUPPORTING CHILDREN & YOUTHS
Talking to Youth About ALS/MND Genetics: A resource for families affected
THE ALS EXPERIENCE: IT’S DIFFERENT AND HARD
A Book for Teens in Families Living With ALS
School, Friends, Work, and ALS: A Young Adult Guide to Balancing Life With ALS
At School: A Guide to Supporting Students Who Have Been Affected by ALS
LUKi Education Packet
This packet includes lots of resources for children, youth, families and organizations - including:
- History of LUKi and the Lights
- ASK LUKi pages for children and adolescents
- FAQ's for families
- Questions that follow each section of the movie - helping to guide conversations with children
LUKi Coloring Book
Color along with LUKi! This book follows the film, and is a great resource for children after watching the film, as they process the major themes. Plus, several activities are included addressing caregiving, death and dying.Â
