Family Support Resources
The Child Neurology Foundation (CNF) is a patient advocacy organization offering tools, education resources, and a network of more than 48 organizations to help children and their families living with neurologic conditions find social services and emotional support.
CNF’s Family Support Program helps families navigate the journey of being a caregiver of a child with a neurologic condition. Families can connect with trained staff who will listen and help with:
- Learning about a child neurology disorder and clinical trials
- Connecting to disease-specific organizations
- Talking to another parent
- Navigating insurance and more
See the CNF Family Support Program flyer to learn more. You can request help online or by calling (859) 551-4977.
Childhood Tracheostomy Alliance
The Childhood Tracheostomy Alliance is a non-profit created by families and healthcare providers working together to transform the care and quality of life of children with tracheostomy and ventilator dependence and their families. The Alliance is focused on educating communities, improving access to in-home support and supplies, helping with out-of-pocket medical expenses, and providing a network of support from both caregivers and healthcare professionals. The Childhood Tracheostomy Alliance website includes:
- Frequently asked questions and terms about tracheostomy and mechanical ventilation
- Annual caregiver grants
- A list of resources by state
Children’s Burial Assistance (CBA) helps families honor their deceased children with a decent and proper burial. Families without life insurance or money saved to bury their deceased child, ages 1 through 17, may be eligible. CBA resources include:
- The “What To Do – The First 48 Hours of Your Child’s Death” guide
- A database of service providers
- Burial plots, urns and other in-kind gifts to offset the cost of a burial
Parents, legal guardians or family members may apply online for assistance. Please note: CBA does not provide financial assistance for funeral service fees or grave markers. Visit the CBA website for more details.
Children’s Craniofacial Association
Children’s Craniofacial Association (CCA) is a national, nonprofit organization providing resources to empower and give hope to individuals and families affected by craniofacial conditions. CCA resources include:
- Financial assistance
- Educational overviews and video library
- Craniofacial surgery care packages
- Resources for teachers and parents
Visit the Children’s Craniofacial Association website for more details.
Chinese American Service League
The Chinese American Service League (CASL) is a nonprofit agency with 40-plus years of experience educating youth, caring for seniors, training the workforce, placing immigrants on the path to citizenship and securing the housing and financial wellbeing for families and individuals in the Chicago Chinese community and beyond.
CASL has programs centered around children and youth development, senior wellness and independence, employment and financial empowerment, community and family wellbeing, Center for Social Impact and legal services.
Claire’s Place Foundation for Cystic Fibrosis Support
Claire’s Place Foundation is a non-profit organization providing support to children and families affected by cystic fibrosis (CF).
Its programs are focused on creating a better quality of life for people and their caregivers as well as emergency funding assistance during long hospital stays. Its programs include an Extended Hospital Stay Grant Program and the Support Families and Resources Program.
Clearbrook’s various respite programs offer an array of services to people with intellectual and developmental disabilities. These services are designed to help maintain individuals with developmental disabilities in the individual/family home by providing short-term relief to primary caregivers.
Clearbrook provides respite services in the following counties: Lee, Dekalb, Stephenson, Winnebago, Jo Daviess, Ogle, Boone, Cook, Lake, Will, Kankakee, Grundy, Kendall, Kane, McHenry and DuPage.
Coloring Pages for Caregivers
UIC’s Division of Specialized Care for Children has created adult coloring pages to help caregivers relieve stress and practice mindfulness. Four designs are available in English and Spanish:
Lighthouse (Lighthouse Spanish)
Sunflowers (Sunflowers Spanish)
ComeUnity is a parent support website with resources on parenting children with special needs, adoption, child development and multiple lists of groups and organizations providing information on specific topics or areas.
Visit www.comeunity.com/index.html.
Coming Out: Information for Parents of LGBTQ Teens
HealthyChildren.org, the parenting website of the American Academy of Pediatrics, provides parents of lesbian, gay, bisexual, transgender, and questioning (LGBTQ) teens information on understanding, supporting and remembering that each child is unique and will have their own experiences and feelings along the way.
“Coming Out: Information for Parents of LGBTQ Teens” provides help for parents and children navigating the many aspects of acceptance.