Resources for Families
General Support Groups
- 988 Suicide and Crisis Lifeline
https://988lifeline.org/ - The Compassionate Friends Supporting Family After a Child Dies
https://www.compassionatefriends.org/ - MISS (Mother in Sympathy & Support) Foundation
https://www.missfoundation.org/
Disease-Specific Support Groups
SUID/SIDS:
- Cribs for Kids Helping Every Baby Sleep Safer
https://cribsforkids.org/ - First Candle Saving Babies Supporting Families
https://firstcandle.org/ - Share Pregnancy and Infant Loss Support
https://nationalshare.org/ - Sudden Unexplained Death in Childhood (SUDC) Foundation
https://sudc.org/ - The TEARS Foundation
https://thetearsfoundation.org/
Heart:
- Children’s Cardiomyopathy Foundation
https://www.childrenscardiomyopathy.org/ - Hypertrophic Cardiomyopathy Association (HCMA)
https://4hcm.org/ - National Coronary Anomalies Foundation (NCAF)
https://www.nationalcoronaryanomalies.org/ - Parent Heart Watch The National Voice Protecting Youth From Sudden Cardiac Arrest
https://parentheartwatch.org/ - Sudden Arrhythmia Death Syndrome Foundation Sudden Arrythmia Death Syndromes
https://sads.org/
Epilepsy:
- Citizens United for Research in Epilepsy (CURE)
https://www.cureepilepsy.org/ - Danny Did Foundation
https://www.dannydid.org/ - Epilepsy Foundation
https://www.epilepsy.com/
State-Specific Resources for Medical Evaluation of Surviving Family Members
California
If heart disease is identified or death remains unexplained:
University of California San Francisco
- San Francisco Postmortem Systematic Investigation of Sudden Cardiac Death (POST SCD) Study
- Cardiovascular Genetics Program
Delaware
If heart disease is identified or death remains unexplained:
- A.I. duPont Hospital, 302-651-4000
If the child has epilepsy or history of seizures:
- Epilepsy Foundation of Delaware, epilepsyfoundation.org/delaware
Indiana
If heart disease is identified or death remains unexplained:
- Riley Children’s Health / Indiana University Health, Benjamin Helm, MS, LCGC, 317-274-3901, bmhelm@iu.edu
- Genetics, 317-274-3901
- Cardiology, 317-274-8906
- Neurology/epilepsy, 317-948-7450
Michigan
If heart disease is identified or death remains unexplained:
- C.S. Mott Children’s Hospital – University of Michigan Congenital Heart Center, 734-764-5176
- Children’s Hospital of Michigan – Cardiology, 313-652-1305
- Spectrum Health Cardiovascular Medicine, 616-885-5000 (Adult)
- Helen DeVos Children’s Hospital HDVCH Inherited Arrhythmia and Cardiogenetics Program, 616-267-9150 (Pediatrics)
- University of Michigan at Grand Rapids, 616-252-5970
- Bronson Pediatric Cardiology, 269-341-8786
If the child has epilepsy or history of seizures:
- University of Michigan Neurology, 734-936-4179
- Children’s Hospital of Michigan Neurology, 888-362-2500
- Helen DeVos Children’s Hospital Neurology, 616-267-7600
- Bronson Pediatric Neurology, 269-341-7654
Minnesota
If heart disease is identified or death remains unexplained:
- Minneapolis Heart Institute Genetic Arrhythmia Center, 612-775-3905, 1-800-582-5175
- University of Minnesota Genetic Counseling Services
Nevada
If heart disease is identified or death remains unexplained:
- Children’s Heart Center Nevada, 702-732-1290, 775-324-6644
If the child has epilepsy or history of seizures:
- Epilepsy Foundation of Nevada, 877-467-3496
New Hampshire
Coming soon…
New Mexico
If heart disease is identified or death remains unexplained:
- University of New Mexico Pediatric Cardiology, 505-272-3864
If the child has epilepsy or history of seizures:
- University of New Mexico Epilepsy Center, 505-272-3160
Pennsylvania
If heart disease is identified or death remains unexplained:
- Children’s Hospital of Philadelphia (CHOP)
- Electrophysiology and Heart Rhythm Program | Children’s Hospital of Philadelphia (chop.edu), 215-590-4040
- Division of Human Genetics, 215-590-2920
- St. Christopher’s
- Heart Center for Children, 215-427-4820
- Clinical Genetics, 215-427-8413
If the child has epilepsy or history of seizures:
- Children’s Hospital of Philadelphia (CHOP)
- Pediatric Epilepsy Program, 215-590-1719
- St. Christopher’s
- Epilepsy Center, 215-427-3878
Tennessee
If heart disease is identified or death remains unexplained:
- Vanderbilt University Medical Center
- The Center for Inherited Heart Disease, 615-322-7602
If the child has epilepsy or history of seizures:
- Vanderbilt University Medical Center
- Vanderbilt Neurological, 615-936-0060
Utah
If heart disease is identified or death remains unexplained:
- Intermountain Heart Institute Genetic Heart Disease Program
- Adult Cardiovascular Genetic Counseling, 801-507-4600
- Primary Children’s Hospital Cardiology Clinic, 801-213-3599
If the child has epilepsy or history of seizures:
- Primary Children’s Pediatric Neurology Clinic, 801-213-3599
- Genetic counseling:
- Primary Children’s Genetics Clinic, 801-213-3599
Virginia
If heart disease is identified or death remains unexplained:
- Children’s Hospital of the King’s Daughters
- Pediatric Cardiology, 757-668-7214
- Pediatric Neurology, 757-668-9920
Wisconsin
If heart disease is identified or death remains unexplained:
- Children’s Hospital of Wisconsin, 414-266-2000, 877-266-8989
- Froedtert Hospital, 414-805-3000