Resources

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 to help illustrate the experiences of children who have a loved one living with ALS.

 

The ALS Experience: It’s Different and Hard

“Choose Your Own Adventure”-type guide, middle school youth, ages 13-18. This book follows the stories of three adolescents, providing examples of how they talked to people in their lives about ALS, who they talked to, and the outcomes of their conversations. The book encourages other readers to choose who they might want to talk about ALS and their experiences. An online companion version has been developed to give readers a more interactive experience.

 



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 time spent caring for their loved ones with ALS, their own lives, and school responsibilities and relationships. It is minimally illustrated and uses actual stories and quotes.

 


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

Manual for families living with ALS. This manual is the result of many years of clinical social work practice and research with families, children, and youths affected by neurological illness. While much attention is paid to the person with ALS and their adult family member/caregivers, children and youths are often voiceless, despite experiencing much of the same shock, sadness, caregiving and grief as their adult counterparts.