Resource Directory /

Health Condition and Disability-Specific Resources

  • The Children’s Heart Foundation

    The Children’s Heart Foundation is dedicated to advancing the diagnosis, treatment and prevention of congenital heart defects (CHD) by funding the most promising research. Its resources include CHD facts, information on the different types of CHD, “The Heart of the Matter” documentary,  and where to find support.

    The Children’s Heart Foundation also provides “It’s My Heart,” a resource book for patients and families affected by congenital heart defects. The book, which is written in plain, easy-to-understand language,  describes the types of CHDs a child may face, along with:

    • Explanations of the various tests, surgical procedures and treatments
    • Helpful diagrams
    • A glossary of medical terms and much more

    For questions, please contact the Children’s Heart Foundation at (847) 634-6474 or info@childrensheartfoundation.org.

  • The Decibels Foundation

    The Decibels Foundation supports children with hearing loss from birth through the time that they enter a mainstream educational environment and beyond. Using a family-centered approach to hearing loss programs, the Decibels Foundation  helps the children by first helping their parents learn how to raise a child with a hearing loss, then helping school systems understand what it takes to educate a child with hearing loss.

    The Decibels Foundation’s Resources page offers key information on:

    • Associations and programs
    • Articles and books
    • Simulated demonstrations of listening with hearing loss and devices
    • Cochlear implant resources
    • Education and accessibility
    • Speech and language support
    • Social and emotional support
    • Apps and more

    For questions, contact the Decibels Foundation at (978) 637-2622 or info@decibelsfoundation.org.

  • The Dysautonomia Project

    The Dysautonomia Project (TDP) is a non-profit, collaborative effort of volunteer healthcare providers, patients and community leaders working together to bridge the gap between what autonomic specialists know and what community-based providers and patients need to know. TDP provides a wide variety of help and information for patients and clinicians, including:

  • The Early Years Project

    The Early Years Project is a free online toolkit from the Illinois Early Hearing Detection and Intervention Program featuring easy-to-follow videos, activities and resources. Parents, caregivers, and educators can use these materials to help foster sensory development in young children, from birth to 6 years old.

    The Early Years Project toolkit aims to supplement home visiting and early education programs. It includes information on developmental milestones, activities, resources and more in four areas:

    • Hearing
    • Vision
    • Communication
    • Language

  • The HAP Foundation

    The HAP Foundation provides patient-centered hospice and palliative care education, research, workforce development and support. The foundation helps any family of a child or adult living with a serious illness understand palliative and hospice care options, and connect to and strengthen care throughout their journey. The HAP Foundation resources also include:

    • Palliative and hospice care information for families and medical professionals
    • Help for finding and accessing care
    • Missing Pieces support group for anyone grieving the loss of a child
    • The Pediatric Resource Guide for patients, families and practitioners
    • Chicagoland resources and events

    For questions, contact the HAP Foundation at (312) 741-1283 or info@thehapfoundation.org.

  • The HIKE Fund, Inc.

    The official site of the Hearing Improvement Kids Endowment Fund, Inc. (HIKE). The Hike Fund provides hearing devices for children with hearing loss aged newborn to 20 years whose parents are unable to meet this special need financially.

    See the Hike Fund application form for more details about eligibility requirements and how to apply. You can also email applications@thehikefund.org for more details about the application process.

  • The Humanitarian Foundation

    The Grottoes International Humanitarian Foundation is a nonprofit organization that helps cover the cost of dental treatment and anesthesia costs, whether done in a hospital setting or dental office, for children with special needs. The program does not cover the hospital costs.

    The Dental Care for Children with Special Needs Program is for children under 21 with one or more of the following conditions:

    • Cerebral palsy
    • Muscular dystrophy and related neuromuscular disorders
    • Intellectual disabilities, including Down Syndrome
    • Dental care for organ transplant recipients (pre- and post-transplant)

    Learn more on the program’s eligibility and application page. For more information, fill out the program’s Contact Us form, email hf@hfgrotto.org or call (614) 933-0711.

  • The Illinois Society for the Prevention of Blindness (ISPB)

    The Illinois Society for the Prevention of Blindness (ISPB) promotes vision and eye health across Illinois. ISPB provides:

    • Eye care education programs and information
    • Youth replacement glasses and low-vision equipment reimbursement services
    • Research grant opportunities
    • Speakers and screening events

    For questions, please contact ISPB at efineman@preventblindness.org or (312) 363-6029.

  • The Journey Through Diagnosis: A Guide for Families of Children with a Genetic Condition

    Midwest Genetics Network provides an online guide featuring information, resources and support to help guide families whose child has been diagnosed with a genetic condition. It is written from the family perspective and includes information they felt was important when facing a new diagnosis.

    Midwest Genetics Network (MGN) is one of seven federally funded Regional Genetics Networks (MGN). MGN unites patients, families, geneticists, genetics professionals, primary care providers, payers and public health experts from Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin to improve equity in access to genetic services for medically underserved populations.

    This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS).

  • The KASE Project

    The KASE Project aims to raise awareness and support for autism through community outreach in the Springfield area. Its programs include:

    • PECS (Picture Exchange Communication) at the Park – an initiative to install picture communication boards at local parks and playgrounds.
    • PALS (Parent Autism Life Support) – a caregiver support initiative for parents, siblings and caregivers of children and adults with autism in Sangamon County. PALS currently hosts a support group for moms.
    • FLASH (Friends Learning and Sharing Hope) – an effort to bring adaptive sports to the Chatham community and beyond.
    • SIBS – A Sibshops program for siblings of children with health, mental health and developmental needs.

    For questions, please contact the KASE Project at info@thekaseproject.org.