Samsung Heirs’ Battle with Rare Disease Leads to Medical Breakthrough

Samsung Family’s Genetic Disease, Charcot-Marie-Tooth
Korean Researchers Develop Treatment Method
Chairman of the CJ Group, Lee Jae Hyun, Struggles Greatly

Charcot-Marie-Tooth disease, an inherited genetic condition that troubled the late Lee Kun Hee, former chairman of Samsung Electronics, and his family, was thought to be incurable. However, Korean researchers have opened up the possibility of a treatment.

According to recent medical reports, a joint research team led by Professor Yum Soo Cheong of Seoul National University’s International Agricultural Technology Graduate School and Professor Choi Byung Ok of Samsung Seoul Hospital’s Neurology Department developed the world’s first customized gene therapy for Charcot-Marie-Tooth 2Z.

They created induced pluripotent stem cells from patients with the disease-causing MORC2 gene and then identified how the mutation could lead to nerve damage.

This disease, named after the three doctors who first discovered it in 1886, is a rare neurological disorder that affects only 19 out of every 100,000 people. It can cause loss of sensation, muscle contractions, and difficulty walking in the arms and legs. If the symptoms are severe, brain disorders can occur, and the patient may depend on a wheelchair for mobility.

In Korea, it is well-known as a genetic disease that affects the Samsung family.

Samsung Group founder Lee Byung Chul’s wife. Park Du Eul suffered from this disease, and the late Lee Kun Hee, former chairman of Samsung Electronics, his daughter Lee Boo Jin, president of Hotel Shilla, Lee Jae Hyun, chairman of CJ Group, and his siblings, vice chairman Lee Mi Kyung and former vice chairman Lee Jae Hwan, are also patients.

CJ Group Chairman Lee Jae Hyun is known to be severely affected. He often appears at official events leaning on a cane.

Previously, he was arrested and sentenced to prison in 2013 on charges of embezzlement and tax evasion. However, due to his severe symptoms, he was hospitalized under a stay of execution and was released in 2016 through a special pardon after giving up a Supreme Court appeal.

CJ Group has previously released photos of the chairman’s hands and feet. His hands and feet were severely bent, and his calves were abnormally thin. The group explained that he struggled with basic daily activities such as walking, writing, and using chopsticks.

The research team developed a gene therapy using a nerve-specific virus to restore the function of the MORC2 gene. Through animal testing, they confirmed that a single injection of the treatment restored the function of the nerves and muscles to normal levels.

Nine gene therapies have been developed. Still, the cost of a single treatment is estimated to be in the millions. The team aims to commercialize the therapy within five years through further research.