Support and Resources for Youth

Kids Need Support Too

The illness of a parent or loved one can affect the emotional, social, and behavioral development of children. Most families want to protect their children from the news of hearing that their loved one has a terminal illness. While there is no right or wrong way for you to discuss this topic with your children, it is important to understand that there are resources to support you in this.

ALS United Greater Chicago strives to support individuals impacted by ALS and their families. We strive to create programs to support you and your loved ones through every step of your ALS journey. We hope this page and attached resources and links serve as a guide to help children navigate the emotional, social, and behavioral changes they may experience while their loved one battles ALS. Here you will find:

  • age-appropriate PDFs
  • counseling resources
  • and books to help them understand ALS and its impact on their loved ones.

These resources aim to support and prepare children for the effects of ALS, offering valuable guidance throughout their journey.

Books, Toolkits, & Resources

  • And Love Speaks: Helping Children Understand ALS book by Jamie L Blair and Elie James Wile for ages 5-10. View on Amazon.
  • But She Still Can Love: A Child’s Understanding of ALS book by Amalia Flecksteiner and Maggie Horton for ages 5-10. View on Amazon.
  • Wonders & Worries is a free service that supports children and adolescents ages 2-18 dealing with serious illness from parents and loved ones. They offer a collection of online resources for parents and children. Explore at:
  • Toolkit to Help Educators Support Children of Parents with Serious Illness was put together by Massachusetts General Hospital’s Marjorie E Korff Pact Program: Parenting at a Challenging Time. Read at:
  • Sunflower Petal Project worksheet for ages 3-6. This simple yet impactful worksheet invites young children to fill in sunflower petals with activities they love doing with their loved one with ALS. It promotes dialogue and helps families adapt these activities as needed, ensuring cherished moments continue, like enjoying a walk together with the aid of a wheelchair.
  • Red Lights/Green Lights of ALS worksheet for ages 5-8. visually distinguish between activities their loved one with ALS can or cannot participate in. By coloring a stoplight green or red, children can better understand and communicate about these activities. Coming Soon.
  • ALS Word Search worksheet to get familiar with words surrounding life with ALS. Coming Soon.
  • "The five W's and How" comprehensive worksheet designed to help teenagers and young adults learn about ALS. Coming Soon.


  • Global Neuro Ycare is a specialized day-long training designed for young caregivers, offering hands-on skills and knowledge through sessions led by a diverse team of healthcare professionals. It aims to build a supportive peer network and enhance caregiving capabilities in a dynamic and engaging setting. Learn more:
  • Hope Loves Company provides emotional and educational support to children and young adults who had or have a loved one impacted by ALS. They have a network of online and in-person gatherings across the US. Learn more:
  • Winning with ALS offers grants and support for families with children who are living with a parent diagnosed with ALS. Learn more:
  • Barr Harris Children Grief Center, part of the Chicago Psychoanalytic Institute, offers support in specialized services provided in Downtown Chicago and Evanston for children and adolescents ages 5-18 and families who have experienced a significant loss such as the loss of a parent, caregiver, or sibling. Learn more:
  • Catholic Charities offers comprehensive counseling services to residents of Cook or Lake Counties. Spanish and English services are available online or in person and flexible payment options are available. Reach out to the intake line at 312-655-7725 or email
  • The National Alliance for Grieving Children consists of dedicated professionals willing to support children who are grieving and connect with communities and organizations to better support children. They have a list of programs and grief centers that can be found by state. Learn more:
Play Video
Play Video


  • Supporting the Unsung Heroes: Children and Youth of ALS Warriors - Watch Here
    This presentation is designed to provide crucial support and resources for young individuals impacted by ALS within their families. Recognizing the significant challenges faced by children and youth who have a loved one battling ALS, this presentation offers a range of tailored resources to address their emotional, social, and practical needs. The aim is to empower these young individuals, equipping them with the tools and support necessary to navigate the complexities of living with a family member affected by ALS.
  • Kids Need Support Too | Recorded October 11, 2022 - Watch Here
    Anticipatory grief is the anticipation of loss, often felt when a loved one is facing a terminal illness. Experts in the field will present information and resources about anticipatory grief, age-appropriate expressions of grief, and resources to cope with the losses associated with ALS.