Resource Directory /

Family Support Resources

  • PKU Organization of Illinoissun-icon

    The PKU Organization of Illinois provides resources and support to teens, adults and families with PKU and 16 allied disorders.

    Their website includes information about understanding and managing phenylketonuria (PKU), diet, local resources, events, what to expect at different life stages and a PKU binder toolkit.

  • 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

  • Postpartum Support International

    Postpartum Support International (PSI) provides a worldwide network of peer support, information, professional trainings and coordinators in all U.S. states. Its mission is to promote awareness, prevention and treatment of mental health issues related to childbearing in every country worldwide. PSI has more than 400 local support volunteers who provide support, information, encouragement and connection with local providers and support groups.

    PSI offers 50-plus free online support groups to connect with other parents, including groups for special needs and medically fragile parenting, birth trauma support, neonatal intensive care unit (NICU) postpartum parents and more. PSI also moderates closed Facebook groups for moms and dads.

    PSI also has a helpline for anyone to get basic information, support and resources. You can call or text daily from 7 a.m. to 10 p.m. central standard time at:

    • Call (800) 944-4773 for English and Spanish support
    • Text in English to (800) 944-4773
    • Text en Español to (971) 203-7773

    Resources are available in English and Spanish.

  • Prairie State Legal Services

    Prairie State Legal Services is an organization that offers free legal services for low-income persons and those age 60 and over who have serious civil legal problems and need legal help to solve them.

    There are 11 office locations serving 36 counties in northern Illinois. The resources page also provides references to self-help information.

  • Project Fire Buddies

    Project Fire Buddies is a nonprofit group of Chicago-area firefighters and first responders who find ways to support and spread joy to children with serious illnesses and their families.
     
    The project volunteers organize toy drives, bring Haloween candy to children who are too sick to trick-or-treat and invite kids to local firehouses. Volunteers also visit with their fire buddies at home to play games, read books, bring gifts for special occasions and more.
     
    Project Fire Buddies started with the Oak Forest Fire Department but has grown to include more than 20 departments.

  • 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.

  • Project SUN in Kankakee County

    Project Strong and Unified Network (Project SUN) is a family-driven, youth-guided and community-based system of care in Kankakee County. Project SUN provides resources, training and community education about children’s behavioral health and other child and family wellness topics. Its services include:

    • Helping families navigate their children’s mental, emotional and behavioral health systems of care through trained staff and volunteer Community Navigators
    • Supporting families on their journey by training peer parent mentors and companions and offering appreciation events for caregivers
    • Assisting parents and youth to gain the skills necessary to actively participate in their care planning and delivery
    • Offering professional development training for mental, emotional and behavioral health service providers
    • Providing community education with a focus on children and their families

  • Project Sweet Peas

    Project Sweet Peas is a national non-profit organization providing support to families and caregivers of premature or sick infants and families impacted by pregnancy and infant loss. Programs include neonatal intensive care unit (NICU) care packages, remembrance memory boxes, peer-to-peer support groups and NICU family financial aid, hospital events, remembrance vigils and educational materials.

    Project Sweet Peas also offers:

  • RAMP- No Limits Center for Independent Living (CIL)

    RAMP (RAMP-CIL) is a non-profit, non-residential Center for Independent Living (CIL). It welcomes anyone with a disability, regardless of their disability, age or economic status. The organization serves Boone, DeKalb Stephenson, and Winnebago counties. RAMP-CIL services for youth and adults include:
    • Information and referral
    • Youth education and advocacy
    • Portable ramp loans
    • Independent living skills training
    • Employment services
    • Fast Track Transition services for youth

  • Rare Caregiver Respite Program

    The National Organization for Rare Disorders’ (NORD) Respite Program is for caregivers (parent, spouse, family member or significant other) of a child or adult diagnosed with a rare disorder.

    The Respite Program provides financial assistance to enable the caregiver a break to attend a conference, event or simply have an afternoon or evening away from caregiving. Financial assistance will be granted up to $500 annually for those who qualify. Awards may be spread throughout the year or in a single-use.

    For more information about this program, contact NORD at (203) 616-4328 or email CaregiverRespite@rarediseases.org.