Brian Impact Supports Rare Disease Caregiver Training Project with 500 Million KRW Funding

Collaboration with Seungil Hope Foundation

Brian Impact and representatives from Seungil Hope Foundation are signing a support agreement for the "Professional Caregiver Training Project for Patients with Severe Muscular Rare Diseases such as ALS" and taking a commemorative photo. (Photo by Brian Impact)

Brian Impact is partnering with Seungil Hope Foundation, which is dedicated to helping patients suffering from rare diseases such as amyotrophic lateral sclerosis (ALS), to provide 500 million KRW in support for training professional caregivers for patients with severe muscular rare diseases (hereinafter referred to as severe rare disease patients).

On the 23rd, Brian Impact signed a support agreement with Seungil Hope Foundation for the "Professional Caregiver Training Project for Patients with Severe Muscular Rare Diseases including ALS," pledging 500 million KRW to assist patients suffering from severe rare diseases.

Seungil Hope Foundation is the only foundation in Korea dedicated to patients with severe muscular rare diseases. It was established in 2011 by Park Seung-il, the youngest professional basketball coach in Korea diagnosed with ALS in 2002, and the singer Sean, who supports him. ALS is a rare disease where cognitive abilities such as thinking and judgment, as well as sensory functions, remain normal, but motor neurons lose strength, eventually rendering the patient completely immobile.

Seungil Hope Foundation has been conducting various participatory fundraising activities, including the Ice Bucket Challenge, aiming to establish a specialized nursing hospital that provides tailored treatment and care for patients suffering from ALS and other severe rare diseases. Based on these efforts, the foundation plans to begin construction of the specialized nursing hospital within this year and complete and open it in 2024.

Brian Impact, sympathizing with Seungil Hope Foundation’s efforts, has decided to provide a budget of 500 million KRW to establish standards for caregiving services for severe rare disease patients, train professional caregivers, and support the provision of specialized caregiving services.

Patients with severe muscular rare diseases, including ALS, have no cure, making caregiving and nursing care more critical than for general patients. Furthermore, due to the nature of diseases requiring 24-hour care, not only the patients but also their families suffer significant impacts on their livelihoods and quality of life. Statistics show that 70% of families with patients undergoing long-term treatment for severe rare diseases fall into low-income status.

Brian Impact will support Seungil Hope Foundation with 500 million KRW for projects including ▲production and distribution of disease guidebooks ▲research services for developing caregiving services and standards ▲development and distribution of educational materials for professional caregivers ▲training and dispatching professional caregivers, ensuring that trained caregivers can provide systematic and specialized caregiving services to severe rare disease patients.

Additionally, all processes supported by Brian Impact?including research, education, and caregiving service provision?will be digitized and continuously managed. Through this, a database accessible to severe rare disease patients and their families, medical and nursing professionals, caregivers, and other interested parties will be established. Based on this, Seungil Hope Foundation plans to develop a long-term project for an "AI-based automatic matching system between patients and caregivers."

Park Sung-ja, Executive Director of Seungil Hope Foundation, stated, “With the large-scale support from Brian Impact, we aim to fully commit to the next goal of professionalizing and improving the quality of caregiving and care services for patients with severe muscular rare diseases.”

Kim Jeong-ho, Chairman of Brian Impact, said, “By establishing a systematic professional caregiver training system, we hope to break the vicious cycle where long-term caregiving for severe rare disease patients leads to family breakdown, and enable patients to receive specialized caregiving and care services. We hope the collaboration between Brian Impact and Seungil Hope Foundation will be the starting point of hope.”

This content was produced with the assistance of AI translation services.