Family Support Resources
National Paralysis Resource Center
The National Paralysis Resource Center (NPRC), operated by the Christopher and Dana Reeve Foundation, seeks to improve the quality of life for people living with paralysis through grants, information and advocacy. The NPRC assists people as they navigate through the various stages of their recovery after the diagnosis of paralysis.
NPRC offers free tips and information on health, costs and insurance, choosing a wheelchair, home and travel, and help for caregivers. NPRC also offers:
- Information specialists
- Peer and family support programs
- Updates on advocacy/policy initiatives
- A program for veterans and current service members
If you have questions, please email Peer@ChristopherReeve.org.
Offers emotional support from a trained advocate to help you become an empowered and stronger parent. Parent advocates can list, offer emotional support, help you problem-solve, connect you with local resources, help you explore new resources and more.
The National Parent Helpline is available Monday through Friday from 12 – 9 p.m. at (855) 427-2736 (855-4A PARENT).
The National PKU alliance provides information including the latest research, a guide for new parents, educational videos, cooking and food, personal stories, scholarships, and legislation and policy.
Individuals impacted by Phenylketonuria (known as PKU) may also download the PKU Handbook, a guide to help understand, organize information and manage PKU from diagnosis to adulthood.
ARCH National Respite Network and Research Center provides a National Respite Locator on its website as well as additional resources for finding respite in your community.
NeuroJourney is an educational resource for parents, caregivers and clinicians navigating the ever-evolving needs of children with severe neurological impairment (SNI).
You can find both practical and medical information and insights from parents and clinicians about the social and emotional experiences common to having a child with SNI. Resources include a Caregiver Worksheet as well as guidance to help build the care team, prompts for conversations with specialists and more.
NORD: National Organization for Rare Disorders
The National Organization for Rare Disorders (NORD) offers support, information and a variety of events for clinicians, researchers, patients and families affected by rare diseases.
NORD’s Resource Center provides patients and caregivers with free webinars, fact sheets, infographics, links to support and advocacy groups, and referrals for many rare disorders.
NORD’s RareCare Program website provides a list of financial assistance programs that can help patients obtain life-saving or life-sustaining medication they could not otherwise afford.
NORD’s State Resource Center contains local, state and national organizations listed by state or by topic offering free or low-cost services for people impacted by rare diseases.
Normal Moments supports Chicagoland families with critically ill/medically complex children up to age 17 by providing help with many household and outdoor tasks. The organization matches volunteers based on the families’ needs, volunteer location and interests. Support includes:
- In-home help with necessary chores such as house cleaning, laundry, pet care and other errands
- Outdoor services such as lawn maintenance and snow removal
- Annual holiday programs
Note that Normal Moments volunteers may not provide care for dependents. A responsible adult over 18 must be in the house while a volunteer is in the house with children.
Northeast Community Fund in Decatur
Northeast Community Fund helps families in the Decatur and Macon County community with food, clothing, household goods and funding for utility payments, obtaining IDs, baby formula and wipes, emergency lodging and prescription medicines. The organization’s food pantry provides monthly food baskets to those in need. It also operates a microfinance program and a program for families to work with a staff member and mentor to achieve short- and long-term goals to move towards self-sufficiency.
Nourishing Hope helps individuals and families in Chicago by meeting them where they are to overcome barriers. Help includes food programs, trauma-informed mental health counseling in multiple languages, domestic violence support and a wide range of social services. Nourishing Hope offers a choice-based food distribution program that also includes:
- Monthly food distribution and additional produce pickups through five different food access programs.
- A home delivery services for people with disabilities, older adults and homebound neighbors.
- Life-changing social services such as case management, job search support, domestic violence intervention and public benefits assistance (Supplemental Nutrition Assistance Program or SNAP, healthcare, government forms).
Nurse-Family Partnership of Sangamon County
Nurse-Family Partnership of Sangamon County, provided by Southern Illinois University School of Medicine, serves first-time parents in Sangamon County to help improve pregnancy outcomes, child health and development, and economic self-sufficiency.
Nurse-Family Partnership (NFP) creates positive outcomes through nurse home visitors who work with families from pregnancy until the child’s 2nd birthday. Individuals may qualify for NFP of Sangamon County if they are less than 28 weeks pregnant and have financial, social or health risk factors such as:
- Loss of household income or an inability to pay for living expenses
- Chronic health condition(s) or mental health concerns
- Domestic violence
- Transportation or access to care difficulties
No proof of income is required for enrollment. Referrals can be made by providers, nurses, community services and individuals by calling (217) 545-0175, emailing at siunfp@siumed.edu or using IRIS (integrated referral and intake system) or Touch Works “SIU Nurse-Family Partnership”
