脊髓肌肉萎縮症患者的午餐聚會 2009 SMA Patient Gathering Luncheon 2009

脊髓肌肉萎縮症慈善基金為新確診的脊髓肌肉萎縮症兒童及其家人安排了一個午餐聚會，讓各家庭可以有機會聚在一起，互相支持。聚會中，脊髓肌肉萎縮症的職員和成員分享了他們寶貴的經驗，讓所有家長都可以更有信心地照顧他們的孩子，讓他們活得更好。 Families of SMA Charitable Trust organized a luncheon for newly diagnosed SMA children and their family in order to enhance mutual support among these families. With the valuable experience of FSMA staff and members, all parents are more confident to help their children to live a better life.

家長向在現其他家長分享他們在家照顧二十四小時使用呼吸機的兒子的經驗。 Doting parents shared their valuable experience with all parents on how to take care of a 24 hour ventilated child at home.