Establishment of Korea's First Lou Gehrig's Care Hospital Through Seungil Hope Foundation
Awards Presented for Rare Disease Essay and Poetry Contest
Singer Sean received a commendation from the Minister of Health and Welfare for his contribution to the establishment of Korea's first Lou Gehrig's disease care hospital.
On the 27th, the Korea Disease Control and Prevention Agency held a ceremony at the Royal Hotel Seoul in Jung-gu, Seoul, to commemorate the 10th Anniversary Rare Disease Overcoming Day and awarded commendations from the Minister of Health and Welfare and the Commissioner of the Korea Disease Control and Prevention Agency to 31 individuals, including Sean. Rare Disease Overcoming Day is a statutory commemorative day designated as the last day of February every year under Article 4 of the Rare Disease Management Act.
In 2011, Sean co-founded the nonprofit Seungil Hope Foundation with the late Park Seungil, former coach of Ulsan Mobis, who suffered from Lou Gehrig's disease. Lou Gehrig's disease is a rare condition with an unknown cause that results from the partial destruction of motor neurons in the brain and spinal cord. It leads to symptoms such as muscle weakness, muscle atrophy, speech impairment, weight loss, and paralysis of the limbs, and ultimately carries a high risk of death due to respiratory failure.
Im Seung-kwan, Commissioner of the Korea Disease Control and Prevention Agency, is speaking at the "10th Anniversary Rare Disease Overcoming Day Ceremony and Forum" held on the 27th at the Royal Hotel Seoul in Jung-gu, Seoul. Photo by Yonhap News.
As chairman of the foundation, Sean led the Ice Bucket Challenge in Korea and initiated various fundraising campaigns, including participating in the "2023 Chuncheon Marathon," "2023 Miracle365 Ice Bucket Challenge Run," and the "Tongyeong Triathlon." Based on these efforts, he spearheaded the construction of Korea's first Lou Gehrig's care hospital.
The foundation established and began operating the Seungil Hope Care Hospital in Mohyeon-eup, Yongin-si, Gyeonggi-do. In addition, Sean developed care manuals for each stage of the disease and supported approximately 9,000 patients, while also conducting more than 80 campaigns to raise awareness and promote donations for rare diseases.
At the ceremony, Jeong Yeon, research fellow at the Korea Institute for Health and Social Affairs, who oversaw the national survey on rare diseases, and Choi Chanho, head of Sori Workshop, who contributed to improving cultural, artistic, and welfare support for rare disease patients, were also recognized with commendations from the Minister of Health and Welfare. In addition, 16 winners of the Rare Disease Overcoming Essay and Poetry Contest were awarded.
Kim Hyein, who won the grand prize in the essay category, shared her experience of losing weight and reducing fatty liver in order to donate her liver to her child with Alagille syndrome. The top prize in the poetry category went to Hwang Jeongbin, who expressed gratitude to her mother suffering from Behcet's disease through poetry.
Seung Kwan Lim, Commissioner of the Korea Disease Control and Prevention Agency, stated, "When it comes to rare diseases, regardless of the number of patients, it is the nation's duty to stand by them to the very end," adding, "We will further expand public-private cooperation and strengthen support systems that can be truly felt by patients and their families so that their voices are reflected in policy."
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