Midwest Genetics Network
Midwest Genetics Network (MGN) is one of seven federally funded* Regional Genetics Networks. MGN unites patients, families, geneticists, genetics professionals, primary care providers, payers and public health experts from each of our seven states to improve equity in access to genetic services for medically underserved populations. The seven states in the MGN region are Illinois, Indiana, Kentucky, Michigan, Minnesota, Ohio, and Wisconsin.
Our work is guided by a core value of health equity which is achieved when every person has the opportunity to attain his or her full health potential. The patient perspective is an integral part of the work we do. MGN staff includes families of children and young adults with genetic conditions and other special health care needs. MGN also partners with individual patients and families as well as regional and national family organizations.
For more information, visit our website at https://midwestgenetics.org/
Acknowledgements
Multiple families who have a child (or children) with a genetic condition worked with MGN staff to create this website. Some of those families learned of their child’s diagnosis prenatally, some through newborn screening, while others waited months or even years. Their children are affected by a wide variety of conditions including spinal muscular atrophy, cystic fibrosis, PMM2 congenital disorder of glycosylation, sickle cell disease, Pelizaeus-Merzbacher disease (PMD), MECP2 duplication syndrome, metachromatic leukodystrophy, Rett syndrome, phenylketonuria (PKU), Down syndrome, trisomy 18, chromosome 2p deletion, DYRK1A syndrome, and others. You will hear their voices throughout the website. They all wanted to share what they have learned and to pass on to others from their experience.
The Midwest Genetics Network would like to thank the following individuals for sharing their experience, insight, and wisdom for this guide.
Illinois
Tanya Anderson, Gina Jones, and Talana Hughes
Indiana
Maria Maldonado and Rylin Rogers
Kentucky
Sondra Gilbert, Lela Hale, and Nicolai Jilek
Michigan
Candi Bush, Amy Clugston, Chandra Jones, Nicole Fitzpatrick, Lisa Huckleberry, Sandy LaPrad, Scott Newport, and Kristen Reese
Minnesota
Rae Blaylark, Pat Lang, and Melissa Schlemmer
Ohio
David Entwistle, Synthia Cophers, David Hoffman, Allison Kingsley, and Jeannine Ramer
Wisconsin
Brigit Frank and Joe Hameister
*This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) as part of an award totaling $2,295,000.00 with 0% financed with non-governmental sources. This information, content or conclusions are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, HRSA, HHS or the U.S. Government. For more information, please visit HRSA.gov.