Youth Resources

At ALS United Rocky Mountain we realize that ALS affects the entire family. 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. When children are involved, we want them to know that they are thought of during this difficult time. Available are age appropriate books and children's bags designed with developmental ages in mind.

Should children and adolescents in ALS families be told about the illness? The answer is a resounding, "Yes!"

There are many important reasons why children should not only be informed of the illness but included in all phases from the diagnosis onward. 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 ones that 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, but 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

Talking with Young People About ALS: For Schools

A list of college scholarships offered to children of people with ALS.

Youth Support Resources

Hope Loves Company: The only nonprofit in the U.S. dedicated to providing emotional and educational support to children and young adults who have or had a loved one battling Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease.

ALS Society of Canada: An illness like ALS brings about many changes and affects every member of the family. Children and teens may have concerns, fears and questions they don’t know how to cope with or articulate. The following resources are designed specially to help children and teens who have a family member living with ALS.

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 more.

Talking with Children and Youth about ALS: Talking about ALS brings up a lot of emotions and this can be both hard for the parents and children. The webinar below is brought to us by the Jefferson Weinberg ALS Center and shares how to start having these hard conversations.