Project Heritage Shows Support for Expecting Mothers & Families - Celebrating World Down Syndrome Day on March 21st

SALT LAKE CITY, March 16, 2022 /PRNewswire-PRWeb/ -- The World Health Organization and United Nations acknowledges March 21st as World Down Syndrome Day and this date is celebrated annually around the world. At Project Heritage the agency provides critical resources for free to help mothers and families better understand the possible inaccuracies of their fetal genetic test to help save the lives of the unborn, either through the elimination of abortions based on a false positive or based on a better understanding of the infant's predicted disability.

Project Heritage is a program that provides services for these women and is the brainchild of Dr. Julie Eggington, the co-founder of the independent non-profit Center for Genomic Interpretation (CGI) in Sandy, UT. Dr. Eggington started Project Heritage in response to the high false positive rates of prenatal genetic screening, recently covered by the New York Times. As a result, pregnant women that receive genetic screening on their unborn children and are told their child could have a genetic abnormality are encouraged and assisted every single day through the resources offered by Project Heritage.

What the New York Times did not address is that roughly 67% of pregnant women in the U.S. who learn they are carrying a child with a disability - such as Down Syndrome - will terminate their pregnancy, a decision often made from fear about the future quality of life for the child.

CGI's Director of Genetic Counseling Services, Erin Heckaman explains that "Often people in good health and with good intentions assume that the lives of people with disability are terribly sad, or unbearably challenging. However, studies have shown that people with disability who are surrounded by love and support rarely experience a decline in quality of life. In fact, people with disabilities, such as Down syndrome or Edwards syndrome, most often experience as much or even more happiness in life than able-bodied people, as long as they are surrounded by the care and support of loved ones."

Through Project Heritage, CGI is helping to correct misunderstandings about disability with expectant mothers, and to facilitate adoption as another choice for those that feel they cannot raise a special needs child. Through Project Heritage, CGI hopes to increase hope, decrease fear and expand options for pregnant women in such situations. Project Heritage works to connect these women with families who are raising a child with the same or similar disability. Through this peer support, expecting parents learn about what it's like to parent a child with special needs. They discuss both the challenges and the joys, and they learn about social services and other resources available to families raising children with special needs. Often pregnant women who have been supported through this peer matching will choose to birth and raise their child. Or they may choose to work with CGI's Project Heritage partner, Adopting Joy Consulting, to place their child for adoption with one of the many families across the U.S. who wish to provide a loving environment to a child with special needs.

Dr. Eggington, CGI's co-founder and leader, says that "ultimately it's why I co-founded this nonprofit and work on projects that many shy away from. My career in commercial clinical genetics, and the love I have for my children has led me here to lead this nonprofit work. I feel driven to save children's lives. I believe that every life has value. I am extraordinarily grateful to the Lutheran Antioch Foundation, The Church of Jesus Christ of Latter-day Saints, and to those private donors who have made Project Heritage possible. This challenge is enormous and the headwinds are strong. But saving the lives of the most vulnerable among us is something that we must continue to do. I hope many others will support Project Heritage too."

Founded in 2017, CGI's mission is to save and improve lives through encouraging careful stewardship of clinical genetics, genomics and precision medicine. CGI works across the U.S. Precision Medicine sector to implement quality assurance programs to promote the use of accurate clinical genetic testing, while protecting the public from misleading clinical genetic tests. This is critical since "most genetic tests today are not regulated, meaning that they go to market without any independent analysis to verify the claims of the seller," (quoted from the National Institutes of Health's webpage on "Regulation of Genetic Tests").

To learn more about Project Heritage, see https://www.clarifygenetics.org/project-heritage/.

To learn more about the Center for Genomic Interpretation and its work with health insurance payers and other stakeholders. see https://www.genomicinterpretation.org/.

                                                             ###
About Project Heritage
Project Heritage's mission is to to help mothers and their families better understand the accuracies and possible inaccuracies of their fetal genetic test. In collaboration with the Center for Genomic Interpretation, Project Heritage provides resources to help protect both the mother and the unborn child from undue harm that can be caused by natural concerns over birthing a child with special needs. We believe having the right information is critical when making sensitive decisions around pregnancy. We provide our services for free and support all of our clients, no matter what they decide. Project Heritage offers scientific support, information and resources, peer support and adoption education and support services. For more information,call (801) 810-4097 or email at [email protected].

Media Contact

Judy Behm, CGI, 443-440-6001, [email protected]

SOURCE CGI