Patients, doctors and donors celebrate Samsung donation's rare disease project

Home > National > Social Affairs

Patients, doctors and donors celebrate Samsung donation's rare disease project

Published: 21 Oct. 2024, 18:34 Updated: 21 Oct. 2024, 19:34

CHO JUNG-WOO
cho.jungwoo1@joongang.co.kr

Audio report: written by reporters, read by AI

Second row, from left: Samsung Electronics Executive Chairman Lee Jae-yong, former Leeum Museum of Art Director Hong Ra-hee, Seoul National University Hospital (SNUH) President Kim Young-tae, People Power Party lawmaker Kim Yong-tae, SNUH Vice Director Park Joong-shin and Vice Director of Pediatrics at SNUH Choi Eun-hwa, front row, far left, pose with event participants, including children who received support from the Child Cancer and Rare Disease Project, which was launched with a donation from late Samsung Chairman Lee Kun-hee, at SNUH's Children's Hospital in Jongno District, central Seoul, on Monday. [SAMSUNG ELECTRONICS]

Patients, doctors and donors involved with the Child Cancer and Rare Disease Project at Seoul National University Hospital (SNUH) gathered to reflect on the project's vision and celebrate its achievements on Monday. The initiative was established through a donation from late Samsung Chairman Lee Kun-hee (1942-2020).

The event took place at SNUH’s Children’s Hospital in Jongno District, central Seoul, attended by Samsung Executive Chairman Lee Jae-yong and his mother, Hong Ra-hee, the former director of the Leeum, Samsung Museum of Art.

Launched with Lee's donation of 300 billion won ($218 million), the decade-long project supports the treatment and research of childhood cancer and rare diseases.

According to SNUH, developing treatments for such diseases is challenging due to the small number of patients, despite the variety of diseases. In particular, patients living outside the metropolitan area face difficulty accessing treatment.

The project is divided into three major areas.

Of the funds — activated by Lee's family in 2021 — 150 billion won has been dedicated to building infrastructure for treating and researching childhood cancer. Some 60 billion won is being used to create a platform for technology to treat and diagnose rare diseases in children, while the remaining 90 billion won is going toward joint cohort studies.

So far, 9,521 children with cancer and rare diseases have been diagnosed through the project and 3,892 have received treatment. Additionally, 24,608 cohort data have been registered.

During the event, Samsung Chairman Lee Jae-yong encouraged the children who have benefited from the project.

One of the children is 11-year-old Kim Da-el, who began chemotherapy for acute lymphoblastic leukemia in November 2018 at SNUH’s Children’s Hospital. Although he had been recovering, Kim had to undergo chemotherapy again in April 2023 after the disease reappeared. Thanks to the support from the project, he received nine rounds of testing and is now recovering after receiving CAR T cell therapy in June.

"We are persistently working to provide treatment and diagnoses to children with cancer and rare diseases," said Choi Eun-hwa, the vice director of pediatrics at SNUH, who also leads the Child Cancer and Rare Disease Project.

"This project will play a significant role in giving hope not only to the current generation but also to future generations."

With Friday being the fourth anniversary of the late chairman's passing, commemoration ceremonies honoring Lee are set to take place this week.

A commemorative music concert will be held at the Samsung Human Resources Development Institute in Yongin, Gyeonggi, on Thursday. A memorial service will then take place at the family burial site in Suwon, Gyeonggi, likely attended only by family members and company executives.

In addition to the initiative, the family of the late chairman donated 700 billion won to build infrastructure for infectious disease response.

Of this, 500 billion won will be allocated to constructing a central infectious disease hospital, which will act as a command center for addressing new infectious disease crises like Covid-19.

The hospital will feature advanced facilities, including negative pressure isolation rooms, negative pressure operating rooms and biosafety laboratories. It is expected to be completed by 2028 with a capacity of 134 beds.

The remaining 200 billion won will be allocated to the construction of research facilities at the National Institute of Infectious Diseases, under the Korea Disease Control and Prevention Agency, and will fund research to develop vaccines and treatments for infectious diseases.

BY CHO JUNG-WOO [cho.jungwoo1@joongang.co.kr]