Mother turns grief into a mission against orphan diseases

Christina Strong founded the Joshua Hellmann Foundation for Orphan Disease in honor of her son, with the mission of advancing the awareness, diagnosis, treatment and research of orphan diseases, and improving the welfare of children with orphan diseases in Hong Kong.

Orphan diseases refer to rare genetic disorders that usually are not addressed by the pharmaceutical industry because investing in their treatment provides little financial incentive.

There are about 30,000 children and adults suffering from such diseases in Hong Kong.

As part of its efforts to carry out its mission, the foundation joined hands with Mead Johnson Nutrition to launch the Vital Step program, in which 500 qualified parents can enjoy a full subsidy to cover the cost of screening at the Center of Inborn Errors of Metabolism of The Chinese University of Hong Kong (CUHK).

Strong said about one in every 4,000 newborn babies in Hong Kong suffers from inborn errors of metabolism (IEM). In fact, many people do not know they are gene carriers as they do not display the symptoms of the disease.

Read more : Ejinsight