Family Support Resources
The website includes information about the condition Maple Syrup Urine Disease.
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
- Durable Medical Equipment (DME) Grant Program
- Nationwide summer camps
- Resources for caregivers
- Community education and services
My Heart Visit is a program from Mended Hearts that allows heart patients and their families to connect with trained volunteers who are patients themselves, a parent of a child with a heart condition or a caregiver of a loved one with heart disease.
You can connect with someone by phone, text, email or video. It includes the Heartline Hotline at (844) 432-7887 (1-844-HEART87).
myFace is a nonprofit organization that provides individuals and families affected by cleft and other craniofacial differences access to personal stories, education and support.
Resources include:
- Information on craniofacial conditions
- Parent resources
- Virtual craniofacial support groups and networking opportunities
- Educational webinars and podcasts
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 Alliance on Mental Illness (NAMI)
The National Alliance on Mental Illness (NAMI) is the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.
The national NAMI website provides information on supports, services and treatment options that may help. The NAMI National Helpline is (800) 950-NAMI (6264). You can also text “HELPLINE” to 62640 or go to NAMI.org/help to chat with a HelpLine specialist.
Visit the NAMI Illinois website for information about Illinois programs and services.
National Alliance on Mental Illness West Central Illinois Behavioral Health Resource Guide
The National Alliance on Mental Illness West Central Illinois (NAMI WCI) advocates for better lives for individuals who have a mental illness, and to erase stigmas associated with mental health, support and treatment. Headquartered in Mt. Sterling, NAMI WCI serves residents in Adams, Brown, Cass, Greene, Hancock, McDonough, Morgan, Pike, Schuyler and Scott counties.
NAMI WCI supports anyone concerned about mental illnesses and the treatment of mental illness. Its resources include:
- A Behavioral Health Resource Guide containing local information and help
- An up-to-date calendar of events and support groups
- NAMI’s National Helpline Resource Directory
For more information, email NAMI_WCI@namillinois.org.
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 for Cultural Competence
Supports family participation and satisfaction and strives to increase the capacity of health and mental health programs.
