Resources for Family & Youth

Watch Dr. Melinda Kavanaugh's presentation, Talking with Children and Youth about ALS.

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Families and ALS: A Guide for Talking with and Supporting Children and Youths

This resource guide was created primarily for families living with ALS, including parents, grandparents, siblings, and other family members. The goal of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. A key theme throughout this guide is communication — how to do it, maintain it, and include it in everyday life.

Real Kids Talk About ALS: Feeling Normal, Sad, and Different

Graphic novel for youth, ages 7-12. Delivered in a graphic novel format, this book uses direct quotes from youth in the ALS research projects. These quotes help situate the learning style and experiences of children in ALS.

The ALS Experience: It’s Different and Hard

Choose your own adventure guide, middle school youth, ages 13-18. This book follows the stories of three youth, providing options for how they talked to people, who they talked to, and what was the outcome. The book allows other youth to choose who they might want to talk about ALS and their experiences. A companion online version has been developed.

School, Friends, Work, and ALS: A Young Adult Guide to Balancing Life with ALS

Older youth/young adult guide, ages 19-25. This book takes a more serious tone, again following several young adults as they manage their own lives with the care needed for their loved one with ALS, school and relationships. It is minimally illustrated and again uses actual stories and quotes.

Potential Resources for Children and Teens Impacted by ALS

This pamphlet lists potential resources and suggestions to help children and teens who are impacted by ALS. The suggestions are based on our collective experience working with people who have had ALS and their families. Please reach out to your Social Worker or Mental Health clinician if you have any questions or specific concerns about your children or grandchildren.

Hope Loves Company Virtual Hangouts

Hope Loves Company offers free, monthly Zoom “hangouts” for children between the ages of 10 through young adult. There are two available, ages 10 to 12 and ages 13 to 21. Groups are led by a counselor. Registration is required.