Health Condition and Disability-Specific Resources
Margaret Hackett Family Program
Congenital anomalies of the central nervous system (CNS) are congenital disabilities of the physical structure of the brain or spinal cord that occur during fetal intrauterine growth, such as spina bifida, hydrocephalus and other conditions. The Margaret Hackett Family Program (MHFP) at the University of Chicago provides individuals and families with help in diagnosing, understanding, caring for, and addressing the challenges of living with CNS congenital anomalies. MHFP also provides research and research grants.
The Margaret Hacker Family Program also offers:
- A monthly, virtual “Connect Group” for individuals and families affected by CNS anomalies
- In-person quarterly socials
- In-person events twice a year featuring food, giveaways, fun activities and resources
- Help with finding resources and medical care
For questions, please call (773) 795-0622 or email mhfcp@bsd.uchicago.edu.
McLean County Functional Needs Registry
The McLean County Functional Needs Registry helps individuals with special needs during emergencies. The registration form documents the needs of people with physical, mental or medical limitations due to impaired vision, hearing or mobility, and language barriers. The program seeks to ensure that residents with functional needs get the assistance they need during a weather disaster or some other local emergency.
Registration for the program is free, voluntary and confidential. You can fill out an online form or print out a hard copy registration form in English or Spanish on the registry website.
The Mended Hearts program is a national peer-support program for patients with cardiovascular disease, their caregivers, and their families. Mended Hearts provides support and education, raises awareness of the issues faced by those living with heart disease, and advocates to improve quality of life across the lifespan.
It includes Mended Little Hearts, which provides support to families of children with congenital heart defects (CHDs) or other heart conditions, and Young Mended Hearts, which supports young adults ages 18 to 55 who have heart disease, including CHDs.
For questions or to request support, please call (888) 432-7899 or email info@mendedhearts.org.
Mended Little Hearts and St. Jude Medical partnered to create this digital resource guide for parents and caregivers of children with congenital heart disease or defects (CHD).
Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have.
Go to The Mended Hearts, Inc. HeartGuides page and scroll down to see the Mended Little HeartGuide in English and Spanish.
Mental Health and Developmental Disabilities Training Modules
The Mental Health and Developmental Disabilities (MHDD) National Training Center has developed free, easy-to-read online learning modules for people with intellectual and developmental disabilities, their family members and their supporters to learn more about mental health. They also have modules designed for mental health professionals and clinicians.
These training modules are available at www.mhddcenter.org/learn-now.
The training topics include anxiety, bipolar disorders, depression, post-traumatic stress disorder, preparing for a mental health assessment, supported decision-making and what to expect in a mental health therapy session.
The Miracle League of Joliet is a non-profit baseball league for children and young adults (ages 4 to 19) with disabilities. The rules emphasize participation, with every player getting a turn to bat in each inning. A volunteer “Buddy” assists each player at bat and on the field.
League games take place on a custom-designed field featuring a rubberized turf, free from obstacles to ensure players can round the bases and play baseball safely. Visit the Miracle League of Joliet website for more details.
MPHI Center for Precision Public Health
The MPHI Center for Precision Public Health provides educational opportunities for clinicians, public health professionals, community organizations and families. The center focuses on improving the health and well-being of all through research, supporting data-driven initiatives, facilitating community-led program development, and providing technical assistance.
MPHI also provides free CME and CE Modules for families and professionals. Topics include:
- Improving care for developmental disabilities and dysmorphic features
- Patient-centered newborn screening communication
- Decoding genetic test reports for frontline clinicians
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).
