Networking Event For Patients With RSS

Patients with Russell-Silver Syndrome (RSS) are smaller in stature and prone to conditions such as uneven legs, feeding difficulties and heart defects, but they are no less ambitious. A total of 28 guests gathered at the Small Gathering hot pot restaurant on Dec. 7, and 18 partners from the New Taipei City Central Lions Club, as well as Dr. Lin Shuan-pei and Dr. Fang Hong-hsiang from MacKay Memorial Hospital, joined them for the fun event.

Small Gathering was established with the mission of fostering inclusive and diverse employment opportunities for individuals with rare diseases and disabilities. Notably, one of its current employees is living with RSS. In a recent heartwarming event, patients ranging in age from 2 to 25 gathered—many for the first time since the onset of the COVID-19 pandemic. The reunion offered a rare and meaningful chance for individuals across different age groups to reconnect and share the unique challenges they face at various stages of life. During the gathering, Dr. Lin and Dr. Fang provided updates on the latest medical advancements and outlined future research initiatives. Their presentation offered reassurance and hope to attending families, with many parents expressing relief and optimism about their children's continued growth and well-being.

In celebration of the Christmas season, the New Taipei City Central Lions Club organized a DIY event featuring handcrafted eternal flower Christmas tree decorations for RSS patients. Hosted by a store manager and his wife, both with RSS, everyone enjoyed delicious food and warmly shared the ups and downs of their lives in a heartwarming atmosphere.

Translator: David Lee (Becker Muscular Dystrophy)