JScreen, an organization that encourages people to undergo testing for genetic diseases, has launched a campaign highlighting families who lost children to Tay-Sachs disease.
Tay-Sachs is a rare genetic disease found more often among people of Central and Eastern European Jewish ancestry.
Deaths from the disease can be preventable, so the organization is urging everyone to get tested.
“This campaign is not only doing the educational component but then going that extra mile and saying, we are a public health initiative, we are here for you to be able to get screened and there is no excuse not to,” said Hillary Regelman, director of national outreach for JScreen. The organization is headquartered in the Emory University School of Medicine’s Department of Human Genetics in Atlanta.
JScreen is engaged in the effort through September, which is Tay-Sachs Awareness month.
The campaign tells the story of three families who lost children to the disease and one couple who had a healthy baby boy despite both being carriers of it.
The subjects include Kevin and Lisajane Romer, who lost their son Mathew, born in 1995, to Tay-Sachs even though both parents were tested and told that they were not carriers. In this case, providers improperly administered and interpreted the tests.
They established the Mathew Forbes Romer Foundation, which has partnered with JScreen to increase screening initiatives.
Regelman said the Romers are “a great example of a family taking a really devastating situation and trying to turn it into something positive for families across Florida, and so they are great advocates.”
The organization works to prevent other diseases, as well, including cystic fibrosis and gaucher disease. It recommends people undergo tests before pregnancy. Then they can take steps such as a preimplantation genetic diagnosis, which involves vitro fertilization and testing on embryos at risk for a genetic disease.
The organization is working with Bender Group on PR for the campaign.
“Putting it in the press and getting this on people’s radar is a great way to create some awareness and say, this is something you need to be aware of, or if you’re not of childbearing age but have a child or a grandchild, share this information with them,” Regelman said.
This article originally appeared on PRWeek US.