Health Condition and Disability-Specific Resources
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).
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.
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.
For questions, contact NADS at (630) 325-9112 or info@nads.org.
