Books for children, youth & families
In collaboration with families, healthcare professionals, and global partners, including ALS Canada and the ALS Association, we create books and materials to help children and families better understand ALS/MND and the caregiving journey. These resources are designed to open up conversations, build knowledge, and provide comfort.
Children and youth around the world ask the same questions -
How do I talk to my friends and family about ALS/MND?
What will happen when my family member dies?
What is ALS/MND?
Parents also need support in asking how and when to talk to my children about ALS/MND?
The below books address the questions head -on, providing an opportunity for children, youth, families, and schools to explore ALS/MND and support all those affected.
Graphic Novel for Children & Youth
REAL KIDS TALK ABOUT ALS: FEELING NORMAL, SAD, AND DIFFERENT
In the words of children and youth, sharing their stories of ALS/MND. The graphic novel has been translated in several languages and regional dialects through collaborations with - ALS Turkey, ALS Vietnam, ALS Netherlands, ACELA Colombia, ALS Schweiz, and MNDA South Africa.
Available for free download in these languages
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!Â
Parent & Family Guide
FAMILIES AND ALS: A GUIDE FOR TALKING WITH AND SUPPORTING CHILDREN & YOUTHS
How do I talk to my children about ALS/MND?
This book uses clinical expertise and interviews with families to guide the conversation, provide examples of discussions, according to age and development and when and how to discuss death and dying. In English, Spanish and Dutch.
Talking to youth about GENETICS
Talking to Youth About ALS/MND Genetics: A resource for families affected
We are thrilled to share this new resource in partnership with ALS Canada - helping families understandÂ
French - Coming Soon
Book for tweens
THE ALS EXPERIENCE: IT’S DIFFERENT AND HARD
A Book for Teens in Families Living With ALS
This book uses interviews with real teens -Â discussing how they deal with ALS/MND. It follows several teens, and the different ways they chose to talk about ALS/MND with their friends and family
Schools and ALS/MND
At School: A Guide to Supporting Students Who Have Been Affected by ALS
A resource designed specifically for school staff, providing practical guidance and emotional support strategies to assist students navigating the challenges of having ALS impact their lives.
Young Adults & ALS
School, Friends, Work, and ALS:
A Young Adult Guide to Balancing Life With ALS
Why this Book? Being a young adult is a huge transition – going to college, moving away from home, partnering. Add ALS to the mix and it can be overwhelming and lead to stress and confusion about what decisions to make.
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
