Family Support Resources
Parents Helping Parents (PHP) is a nonprofit organization providing training, individual assistance, information and resources about raising a child of any age with any disability or special needs diagnosis.
PFLAG is dedicated to supporting, educating and advocating for LGBTQ+ people and those who love them. Its website includes support resources, links to local chapters and more.
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
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 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.
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.
Rare Sisters Batten Foundation
The Rare Sisters Batten Foundation (RSBF) supports the development of medical research for treatments and cures for CLN3 Batten Disease and also provides monetary assistance to families with children diagnosed with Batten Disease, a neurodegenerative disorder.
Families with children diagnosed with Batten Disease may apply with RSBF for financial help to cover a wide variety of needs. Funds are awarded on a case-by-case basis and contingent on the availability of funds.
