RESOURCES
FOR CHILDREN
Support Resources for Children
Coping with a loved one’s diagnosis of ALS is never easy, but it is especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones.
Should children and adolescents in ALS families be told about the illness? The answer is a resounding, “Yes!”
Support Resources for Children
Coping with a loved one’s diagnosis of ALS is never easy, but it is especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones.
Should children and adolescents in ALS families be told about the illness? The answer is a resounding, “Yes!”
Children Should be Informed
There are many important reasons why children should not only be informed of the illness but also be included in all phases from the diagnosis on. The question before us now is, “How in the world do we even begin to talk with our children and adolescents about the ALS diagnosis and its prognosis?”
First recognize that discussions about ALS will vary according to the age of your children. Perhaps more important than what you say and how you say it is the fact that you are spending special time with your child and listening to his or her questions and concerns. Providing facts slowly will give your child time to digest information and return later with more questions. These are tough questions, but need to be addressed for the emotional health of the child and family.
All families are unique and each has its own customs and patterns of communication. Yet, there are some basic principles that apply to families with children of all ages. Also, each child is different. Use what you know about YOUR child to determine how they will hear and process what you are telling them.
Youth Education & Support Materials
Conversations with children about ALS
Les Turner ALS Foundation has a comprehensive guide on talking with children about ALS including how to start the conversation, and resources for children and young caregivers.
Talking with Young People About ALS: For Schools
This resource from the ALS Society of Canada includes information about how ALS affects children and teens and what school staff can do to support children through the difficulties of a family member battling ALS.
Scholarships for children of people with ALS
Hope Loves Company
Hope Loves Company is a nonprofit organization that provides emotional and educational support to children and young adults impacted by ALS. They offer camps, virtual meet ups, resources, and activities for children, teens, and young adults. Learn more about their programs.
Wonders & Worries
Wonders & Worries provides free, professional support for children and teenagers through a parent’s serious illness, so that they can reach their full potential. They have resources for discussing illness with children, recommended reading for parents and children, and parenting support and tips.
The National Alliance for Grieving Children
The National Alliance for Grieving Children is a national nonprofit with resources for support children experiencing grief and loss. Their Grief Support Resource Library has a wealth of resources for all ages.
Register with us to access free, personalized services—available to all individuals living with ALS, regardless of insurance coverage or immigration status.
Once registered, you’ll meet with our Care Services Team, who will work closely with you to identify your current needs and plan for future support. Research shows that people with ALS who receive comprehensive, individualized care often experience a significantly improved quality of life.
For more information, email
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