Resource Directory /

Family Support Resources

  • Muscular Dystrophy Association

    The Muscular Dystrophy Association (MDA) provides comprehensive information and resources to help with understanding, managing and living day-to-day with muscular dystrophy and related neuromuscular diseases.

    MDA programs and resources include:

    • The MDA Resource Center providing one-on-one support by phone or email for individuals and families looking for resources, activities and more
    • Nationwide summer camps
    • Resources for caregivers
    • Community education and services

  • My Heart Visit

    My Heart Visit is a program from Mended Hearts that allows heart patients and their families to connect with trained volunteers who are patients themselves, a parent of a child with a heart condition or a caregiver of a loved one with heart disease.

    You can connect with someone by phone, text, email or video. It includes the Heartline Hotline at (844) 432-7887 (1-844-HEART87).

  • myFace

    myFace is a nonprofit organization that provides individuals and families affected by cleft and other craniofacial differences access to personal stories, education and support.

    Resources include:

    • Information on craniofacial conditions
    • Parent resources
    • Virtual craniofacial support groups and networking opportunities
    • Educational webinars and podcasts

  • National Alliance for Caregiving

    The National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations providing research, advocacy and innovation to make life better for family caregivers. The Alliance’s research, programs and resources include:

  • National Alliance for Children’s Grief (NACG)

    The National Alliance for Children’s Grief (NACG) raises awareness about the needs of children and teens who are grieving a death and provides education and resources for anyone who supports them. NACG resources include:

    • Free GriefTalk Live events
    • Webinars and continuing education
    • Peer networking

  • National Alliance on Mental Illness (NAMI)

    The National Alliance on Mental Illness (NAMI) is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

    The national NAMI website provides information on supports, services and treatment options that may help. The NAMI National Helpline is (800) 950-NAMI (6264). You can also text “HELPLINE” to 62640 or go to NAMI.org/help to chat with a HelpLine specialist.

    Visit the NAMI Illinois website for information about Illinois programs and services.

  • National Association for Down Syndrome

    The National Association for Down Syndrome (NADS) serves individuals with Down syndrome and their families. NADS’ website provides a variety of webinars, publications and resources for the Chicago metropolitan area and beyond.

    NADS also offers a “Congratulations Basket and Referral Program.” Please note that the organization can only deliver baskets to specific Chicago-area hospitals.

  • National Center for Cultural Competence

    Supports family participation and satisfaction and strives to increase the capacity of health and mental health programs.

  • National Center on Deaf-Blindness

    The National Center on Deaf-Blindness (NCDB) is part of a network of projects for children and youth with deaf-blindness (birth through 21) providing information and learning and development tools for families and educators. NCDB resources include:

    • An overview of deaf-blindness
    • Practice guides and professional development
    • Spanish resources

    NCDB includes state deaf-blind projects in every state, Puerto Rico, the District of Columbia, the Pacific Basin and the Virgin Islands.

  • National Child Traumatic Stress Network Resources for Parents and Caregivers

    The National Child Traumatic Stress Network provides a variety of resources for parents, caregivers and youth related to different types of childhood trauma, including coping with hard times, grief, hospitalizations and more.

    Resources are available in English and Spanish.