脊肌萎病(SMA)患者自強不息 憑毅力超越極限 林鄭為FSMA 18周年感恩慶典主禮 盼引起公眾關注 Spinal Muscular Atrophy (SMA) Patients Strive to

脊肌萎病(SMA)患者自強不息　憑毅力超越極限

林鄭為FSMA 18周年感恩慶典主禮　盼引起公眾關注

(香港‧2016年3月19日) 於1998年成立的脊髓肌肉萎縮症慈善基金 (FSMA) ，18年來為脊髓肌肉萎縮症 (SMA) 患者及其家人舒憂解困，在醫療及生活上提供支援，幫助他們克服困難，追求夢想。早前FSMA會員周佩珊就憑著無比毅力，破格考上香港大學，引起公眾關注。FSMA多年來的努力及病患者自強不息的奮鬥故事，令政務司司長林鄭月娥深受感動，並主動提出出席今日（3月19日）舉行的FSMA 18周年感恩慶典，希望能親自鼓勵一眾FSMA會員及其家人，藉此引起更多人關注SMA病患者。此外，出席的捐助機構包括蘭桂坊控股有限公司主席盛智文博士, 周大福慈善基金理事紀文鳳女士, 中華電力有限公司企業發展總裁莊偉茵女士以及80位FSMA會員及其家人。

林鄭鼓勵患者與家屬彼此扶持　研究設立SMA醫療中心

林鄭月娥女士於致辭時讚揚SMA病患者意志堅毅，並認為他們在抗病路上堅持的故事，鼓勵人們勇於面對眼前的挑戰，為社會帶來不少正能量。她又鼓勵病人及其家屬互相鼓勵，在抗病路上彼此扶持。林鄭月娥女士並指出，過去四年醫院管理局轄下醫院大約為一百位脊髓肌肉萎縮症患者提供跨專科綜合服務。醫管局亦一直研究設立一至兩間提供第三層醫療服務的脊髓肌肉萎縮症醫療中心的可行性，繼續為病人提供適切的治療。

FSMA盼獲更廣泛支持　幫助SMA患者及家人

FSMA創會主席霍陳美玲博士表示，FSMA不但會資助SMA患者購買醫療儀器及向病人提供經濟援助，更會為患者及家人舉辦各式節目及戶外活動，鼓勵家人對病人諒解和支持。她感謝各界對FSMA的慷慨捐助，並希望FSMA今後可獲得更廣泛的支持，繼續推行更多不同計劃，幫助SMA患者及家人。霍博士亦提到，FSMA會員雖然身體不便，但亦不乏大學生及碩士學生，更有亞殘運硬地滾球得獎運動員，可見他們以毅力克服身體殘障，超越極限。

慶典上，霍陳美玲博士代表FSMA致送紀念品予各捐助者，並由林鄭月娥女士聯同一眾嘉賓主持切蛋糕儀式，為FSMA 的18周年誌慶。其後，在場的FSMA會員更以動人歌聲及設計充滿心思的心意卡表達對FSMA的謝意，活動在一片感動氣氛中圓滿結束。

是次慶典活動場地及餐飲由香港半島酒店贊助及提供。

關於脊髓肌肉萎縮症慈善基金 脊髓肌肉萎縮症慈善基金 為脊髓肌肉萎縮症(SMA)患者而設立，資助他們購買醫療儀器，透過向病人提供經濟緩助，解決他們生活上的困難。脊髓肌肉萎縮症是一種遺傳性神經肌病，可使患者身體日漸

衰弱。患者多為兒童，患病後身體嚴重殘缺，需要接受專門醫療服務及先進醫療技術。 基金為脊髓肌肉萎縮症患者及家人舉辦自助式節目及戶外活動，鼓勵家人對病人諒解和支持。此外，基金支持世界一流的醫學研究，務求找出這種疾病的療法，令患者儘早接受治療。基金正計劃2016年為病人之服務工作，包括支援病人就業及家居照顧工作，以期望可以減低病人的生活壓力，使他們可以實踐有意義人生，甚至貢獻社會。

(Hong Kong, 19 March 2016) Established in 1998, Families of SMA Charitable Trust (FSMA) have been dedicated to relieving the hardship and suffering of Spinal Muscular Atrophy (SMA) patients and their families over the past 18 years. FSMA provides medical and livelihood assistance to patients to help them overcome obstacles in pursuit of their dreams. Recently Chow Pui Shan, a FSMA member, succeeded to enter the University of Hong Kong with her strong will power and aroused public attention. Touched by the efforts of FSMA and the encouraging stories of SMA patients, Mrs Carrie Lam, Chief Secretary for Administration, offered to attend the 18th Anniversary Appreciation Ceremony of FSMA today (19 March), in order to show support to FSMA members and their families and attract more attention to SMA patients. Other guests attending the Ceremony included Leonie Ki of Chow Tai Fook Charity Foundation, Allan Zeman of Lan Kwai Fong Group, Quince Chong of China Light and Power Company Limited and Chow Pak Chin of The Hong Kong Medical Association Charitable Foundation, and 80 FSMA members and their family members. CS encourages patients and families to show mutual support In her speech, Mrs Carrie Lam praised SMA patients for their persistence, and said that the stories of their battles against the disease could encourage people to face challenge bravely and inject positive energy into society. She also encouraged patients and their families to show support to each other in fighting the disease. Mrs Carrie Lam said that the hospitals under the Hospital Authority have been providing multi-disciplinary integrated services to about 100 SMA patients in the past four years. The Hospital Authority has also been studying the feasibility of establishing one to two medical centers for Spinal Muscular Atrophy that provide tertiary healthcare services, and will continue to provide appropriate treatment to SMA patients.

FSMA calls for more support to help SMA patients and their families Dr Fok Mei Ling, Founder & President of FSMA, said that FSMA not only subsidized patients to acquire medical equipment and provided financial assistance, but also organized various programs and outings for patients and their families to promote mutual support and understanding. She thanked donors from various sectors for their generous donations and called for more support to help FSMA organize more programs for SMA patients and their families. Dr Fok also pointed out that despite their physical disability, quite a number of FSMA members were Bachelor or Master degree holders, and one of them was even an Asian Para Games medalist in Boccia. This showed that with an unyielding spirit, SMA patients were able to excel.

At the ceremony, Dr Fok presented souvenirs to the donors on behalf of FSMA, and led the cake cutting ceremony with Mrs Carrie Lam and other guests to celebrate the 18th anniversary of FSMA. Afterwards, FSMA members sang a beautiful song and presented a specially designed thank you card to FSMA to express their gratitude. The event ended in a touching atmosphere.

※Special thanks to The Peninsula Hong Kong for sponsoring the venue and the catering of today’s event.

FAMILIES OF SMA CHARITABLE TRUST

Families of SMA Charitable Trust was established to provide financial assistance to patients suffering from an extremely debilitating genetical disease called Spinal Muscular Atrophy (SMA), for medical and para-medical equipment to relieve their hardship. SMA is a form of neuromuscular disease. Many patients are young children who are rendered severely disabled and require specialized medical care and advanced medical equipment.

FSMA runs self-help programs and outings for SMA patients and their family members to promote mutual support and understanding. We also support top-notch international medical research on finding treatment and an early cure for this terrible disease. In 2016, we wish to offer FSMA members employment support services and relieve their stress resulted from homecare difficulties. We welcome your generous support.