Resource Directory /

Marion Resources

  • The Superhero Project

    The Superhero Project matches children facing serious illnesses, disabilities and complex medical needs with artists to create their superhero alter egos.

    The nonprofit interviews kids and teens about their superhero alter egos. Artists then design the characters the children have described, creating a visual representation of their strength, courage and resilience. Families then receive an inspiring poster of their superheroes.

    The Superhero Project is free and open to families around the world.

  • PKU Resources from University of Louisville School of Medicine

    The University of Louisville School of Medicine website provides a wide range of PKU (Phenylketonuria) resources to support families.

    The Family PKU Booklet provides information for families after a positive newborn screening. Using illustrations and clear language, the booklet helps make complicated, scientific information easier to understand.

    The site also includes:

    • Caregiver and school preparation tips
    • Nutrient trackers
    • Downloadable PHE and protein log templates
    • Recipes and low protein food suppliers
    • PKU community resources

  • Tracheostomy Care at Home

    Ann and Robert H. Lurie Children’s Hospital’s Tracheostomy Care at Home page aims to help parents learn how to take care of their child’s tracheostomy (trach).  Topics include:

    • The Tracheostomy
    • Tracheostomy Skin Care
    • How to Suction the Tracheostomy
    • How to Change a Tracheostomy Tube
    • Emergency Care

    Please note: This information is for informational purposes only and is not intended to substitute in any way for medical education, training, treatment, advice or diagnosis by a healthcare professional.

     

  • CDC One-Stop-Shop for COVID-19 Information

    The Centers for Disease Control and Prevention (CDC) provides a one-stop-shop for information on COVID-19 testing, treatment, mask supplies and vaccines.

    Use this site to find:

    The site also includes a phone number (800) 232-0233 (TTY 1-888-720-7489) for any questions.

  • Caring Conversations Toolkit for Families and Providers

    The Pediatric Palliative Care Coalition (PPCC) offers a Caring Conversations Toolkit to help determine when and how to start a conversation about hospice or palliative care. Separate toolkits targeting the needs of families and providers are available.

    Each toolkit offers a series of questions to consider in deciding if it is time to start a conversation about hospice or palliative care for a child with serious illness and how to navigate the discussion.

  • Illinois Association of Education of Young Children (ILAEYC)

    The Illinois Chapter of the Association of Education of Young Children (ILAEYC or Illinois AEYC) works to enrich the quality of care and education of the young child by:

    • Increasing communication among parents, caregivers and professionals involved in the care and education of young children
    • Providing in-service training for the early childhood community
    • Hosting opportunities for community learning

    ILAEYC has chapters and volunteers throughout the state.

  • Project LEAP – Launching Equity in Access to Preschool

    Equip for Equality’s Project LEAP (Launching Equity in Access to Preschool) helps children with disabilities from birth to 6 get Early Intervention and early childhood special education services so that they’re ready to succeed in school. Project LEAP can help your child:

    • Move from Early Intervention to early childhood education
    • Receive the tests needed for special education services
    • Access behavior supports and assistive technology

    Project LEAP can also go to your child’s Individual Education Program (IEP) meetings, mediation and due process hearings in select cases. For more information or to schedule a time to talk, please contact Evelyn Aya at evelynh@equipforequality.org or (312) 895-7351. You may also book a time online to talk.

  • Dentist Locator – Medicaid and the Children’s Health Insurance Program (CHIP)

    Medicaid and the Children’s Health Insurance Program (CHIP) cover dental services, including check-ups, x-rays, fluoride treatments, dental sealants, fillings and more. Use this Dentist Locator to find a dentist in your community who sees children and accepts Medicaid and CHIP.

    If you don’t have coverage, learn more about free or low-cost health insurance available in your area at InsureKidsNow.gov or call 1-877-KIDS-NOW/(877) 543-7669.

  • Reeve Foundation Virtual Support Group for Individuals Living With Paralysis

    The Christopher and Dana Reeve Foundation offers virtual support groups to help individuals who are living with paralysis or caring for a family member who is living with paralysis. The support groups provide an opportunity for members to connect with others who understand what they are going through and to gain support, insight and guidance.

    Group meetings are led by a mental health professional and a peer with lived experience and are conducted in an open forum/conversational format. Separate groups are held for individuals living with quadriplegia, those living with paraplegia and family members/caregivers.