A Social Event For Individuals With CCHS

This year, TFRD, in collaboration with the Department of Medical Genetics at NTU, hosted a social event for individuals with CCHS (Congenital Central Hypoventilation Syndrome) on July 15. This marked the inaugural official gathering for CCHS patients, and a total of 25 patients and their families participated in the event.

The event commenced with an interactive session involving brushing and feeding horses at the Therapeutic Riding Center in Longtan, Taoyuan. This was followed by an enjoyable horseback riding experience in a grassy field, where horses were carefully selected to match the heights of the children. At noon, the participants gathered at the Rare Disease Welfare Center to share their current health conditions, challenges they are facing, and the support they are receiving. Subsequently, the Taiwan Toy Library Association organized a team-building game to instill an understanding of the significance of caring for toys among the children. Finally, the event concluded with a DIY planting activity facilitated by Rare Craftsmen.

Many thanks to all the parties involved for their assistance. Special appreciation to the Department of Medical Genetics at NTU for sponsoring the lunch and drinks, the Therapeutic Riding Center for offering the equestrian experience, and the Taiwan Toy Library Association for facilitating the overall experience. Your love and care greatly contributed to the success of the event. We eagerly anticipate the next gathering.

Translator: David Lee (Becker Muscular Dystrophy)