Establishment of Korea’s first Lou Gehrig nursing hospital through the Seungil Hope Foundation
Rare disease essay and poetry contest also awards prizes
Singer Sean received a commendation from the Minister of Health and Welfare for his contribution to the establishment of Korea’s first Lou Gehrig Nursing Hospital.
On the 27th, the Korea Disease Control and Prevention Agency held a ceremony commemorating the 10th anniversary of Rare Disease Overcoming Day at the Royal Hotel Seoul in Jung-gu, Seoul and awarded commendations from the Minister of Health and Welfare and the Director of the Korea Disease Control and Prevention Agency to 31 people, including Sean. The Rare Disease Overcoming Day is a legal anniversary designated on the last day of February every year in accordance with Article 4 of the Rare Disease Management Act.
In 2011, Sean founded the Seungil Hope Foundation, a non-profit foundation, with the late Park Seung-il, former Ulsan Mobis coach who suffered from Lou Gehrig’s disease. Lou Gehrig’s disease is a rare disease whose exact cause is unknown and is caused by partial destruction of the motor nerves of the cerebrum and spinal cord. Lou Gehrig’s disease causes symptoms such as speech impediment, weight loss, and limb weakness due to muscle weakness and muscle atrophy, and ultimately, there is a high probability of death due to respiratory paralysis.
Lim Seung-gwan, Commissioner of the Korea Disease Control and Prevention Agency, is speaking at the ’10th Anniversary Rare Disease Overcoming Day Ceremony and Forum’ held at the Royal Hotel Seoul in Jung-gu, Seoul on the 27th. Yonhap News
Sean served as the chairman of the foundation and led the Ice Bucket Challenge in Korea, and conducted various fundraising campaigns such as participating in the ‘2023 Chuncheon Marathon’, ‘2023 Miracle 365 Ice Bucket Challenge Run’, and ‘Tongyeong Triathlon’ to build a hospital. Based on this, he promoted the construction of Korea’s first Lou Gehrig Nursing Hospital.
The foundation established ‘Seungil Hope Nursing Hospital’ in Mohyeon-eup, Yongin-si, Gyeonggi-do and began operating it. In addition, Sean developed nursing care materials for each stage of the disease, supported approximately 9,000 patients, and conducted more than 80 rare disease awareness and donation campaigns.
At the event, Jeong Yeon, a researcher at the Korea Institute for Health and Social Affairs, who oversaw the rare disease survey project, and Choi Chan-ho, CEO of Sori Production Center, who contributed to improving cultural arts education and welfare for patients with rare diseases, also received commendations from the Minister of Health and Welfare. In addition, awards were given to 16 winners of the essay and poetry contest on overcoming rare diseases.
Hyein Kim, who received the grand prize in the essay category, shared her experience of losing weight and reducing fatty liver disease in order to provide a liver transplant to her child suffering from Alagille syndrome. The grand prize in the poetry category went to Hwang Jeong-bin, who expressed her gratitude toward her mother, who suffers from Behcet’s disease, through poetry.
Lim Seung-kwan, Director of the Korea Disease Control and Prevention Agency, said, “Rare diseases are an area of responsibility that the nation must follow until the end, regardless of the number of patients.” He added, “We will expand public-private cooperation and strengthen the support system that can be felt so that the voices of patients and their families can be translated into policies.”
Reporter Choi Seung-woo loonytuna@asiae.co.kr
<ⓒEconomic content platform for investors, Asia Economy (www.asiae.co.kr) Reproduction and distribution prohibited>
