For youth

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.

Helping Children Cope with ALS

Keeping your child informed and sharing in the family experience is important when a family member is facing an ALS diagnosis. If excluded, children can feel isolated, forgotten and misunderstood—or they might be coming to their own, inaccurate conclusions. This guide will help you talk to your children about ALS.

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When Someone Special Has ALS

This booklet is designed for children and will address some of the questions they may have about ALS including: What is ALS? What parts of the body are affected? What causes it? Will I get it? Do people with ALS get better? It will also help them address what they might be feeling.

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When Your Parent Has ALS

Only about 3,000 people in Canada are living with ALS, so children may not be able to find support among their peers. This booklet includes helpful information provided by young people who know what it’s like to have a parent with ALS. They talk about their experiences, worries, and fears, and how they coped while their parent was ill.

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Talking with Young People About ALS

This booklet aims to familiarize educators with ALS by providing a better understanding of what a student whose parent has ALS must cope with, and by suggesting how school personnel can be supportive not only while the disease progresses, but also during bereavement.

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