Family and Caregiving Support Resources
The More Than Project is a non-profit that supports special needs families through resources for caregivers, siblings and diagnoses. It aims to empower the entire family unit with understanding, community and compassion. It offers help and support that includes:
- Two larger-scale, in-person retreats a year where caregivers can relax and get a much-needed respite
- The More Than A Sibling program offering grants to siblings of children with disabilities
- The More Than A Teacher program providing sensory rooms to schools, creating more inclusive environments for students
For questions, contact the More Than Project online.
Maple Syrup Urine Disease (MSUD) Family Support Group is a non-profit, mostly volunteer-run organization serving families and professionals worldwide. It provides:
- Support for families affected by MSUD
- Education about the condition and management
- Research
- Advocacy
For questions, please fill out the online form on MSUD Family Support Group’s website.
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
- Home Away From Home family apartments to use during medical care
For questions, please contact myFace at (917) 720-4701 or info@myface.org.
The National Alliance on Mental Illness (NAMI) Homefront Mental Health Resources include:
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
For questions, please contact NAC at info@caregiving.org or (202)918-1013.
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:
- Webinars and continuing education
- Family portal and peer networking
- A search tool for finding local support centers or camps
For questions, contact NACG at (866) 432-1542 or info@nacg.org.
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.
