General Resources
Muscular Dystrophy Association
The Muscular Dystrophy Association (MDA) provides comprehensive information and resources to help with understanding, managing and living day-to-day with muscular dystrophy and related neuromuscular diseases.
MDA programs and resources include:
- The MDA Resource Center providing one-on-one support by phone or email for individuals and families looking for resources, activities and more
- Nationwide summer camps
- Resources for caregivers
- Community education and services
Northern Illinois Food Bank has launched My Pantry Express, an online source for groceries. The program allows families in need of food assistance to choose specific grocery items and pick them up at a preferred participating location.
Pickup locations are available in the following counties: DeKalb, DuPage, Lake, Will, Winnebago.
National Alliance for Caregiving
The National Alliance for Caregiving (NAC) is a non-profit coalition of national organizations providing research, advocacy and innovation to make life better for family caregivers. The Alliance’s research, programs and resources include:
- Guidebooks including its Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses
- Stories from caregivers nationwide
- Research, data and reports focusing on different aspects of caregivers
- Advocacy and policy initiatives
National Alliance for Children’s Grief (NACG)
The National Alliance for Children’s Grief (NACG) raises awareness about the needs of children and teens who are grieving a death and provides education and resources for anyone who supports them. NACG resources include:
- Free GriefTalk Live events
- Webinars and continuing education
- Peer networking
National Association for Down Syndrome
The National Association for Down Syndrome (NADS) serves individuals with Down syndrome and their families. NADS’ website provides a variety of webinars, publications and resources for the Chicago metropolitan area and beyond.
NADS also offers a “Congratulations Basket and Referral Program.” Please note that the organization can only deliver baskets to specific Chicago-area hospitals.
National Center on Deaf-Blindness
The National Center on Deaf-Blindness (NCDB) is part of a network of projects for children and youth with deaf-blindness (birth through 21) providing information and learning and development tools for families and educators. NCDB resources include:
- An overview of deaf-blindness
- Practice guides and professional development
- Spanish resources
NCDB includes state deaf-blind projects in every state, Puerto Rico, the District of Columbia, the Pacific Basin and the Virgin Islands.
National Down Syndrome Society
The National Down Syndrome Society (NDSS) aims to empower individuals with Down syndrome and their families by driving policy change, providing resources, engaging with local communities and shifting public perceptions.
Its resources include information on Down syndrome across the lifespan as well as in the areas of aging, caregiving, education, employment, health and more.
National Federation of Families Home Resources
The National Federation of Families shares resources for parents and caregivers to use at home.
These include educational resources, activities and more that can support families of children and youth who have mental health and substance use needs.
National Library Service for the Blind and Print Disabled (NLS)
The National Library Service for the Blind and Print Disabled (NLS ) is a free braille and talking book library service for people with temporary or permanent low vision, blindness, or a physical or perceptual disability that prevents them from reading or holding the printed page. Through a national network of cooperating libraries, NLS offers books the way you want them: in braille or audio, mailed to your door for free or instantly downloadable.
NLS works to ensure that all may read by providing eligible individuals access to reading material regardless of age, economic circumstances or technical expertise.
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.