Support and 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!"

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

Youth Support Resources

Dougy Center Youth Resources ALSThe Dougy Center

The Dougy Center provides grief support in a safe place where children, teens, young adults, and their families can share their experiences before and after a death. Their website has a wealth of resources for youth and adults dealing with progressive illness and grief and loss. The Dougy Center services are based out of the Portland metro area, but with their worldwide program finder, you can search for grief support near you.

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.

Youth Action Day: May 13th, 2023

Youth Action Day is an opportunity for kids, teenagers, and young adults across the country to take a stand against ALS! Pick a challenge below or create your own idea!  

  • Share your talent- Showcase your hobby and fundraise at the same time!  
  • Write letters to members of congress telling them why ALS research is important 
  • Educate your friends, family members, or school about ALS 
  • Share your hero: Post a picture of your ALS hero on social media using hashtags #ALSHERO and #ALSYouthAction 

Family Day Events- Save the dates!

Join in on a fun day for the whole family. Children, Teens, Grandchildren, and Kids at heart are all invited to participate! This is a wonderful opportunity to meet others and have some fun. Look out for further details and invitation soon.   

Portland Metro Family Day: Saturday, October 7th, OMSI 

Southern Oregon Family Day: Saturday, September 16th, TBD  

Willamette Valley Family Day: Sunday, October 15th, Newport Aquarium 

Central Oregon Family Day: Saturday, September 23rd, TBD 

For support in finding local youth counseling resources, please contact our chapter’s Care Services team at or 503-238-5559 ext 100. We are here to help every step of the way and can provide additional information and advice as needed.

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