Families of SMA Foundation

29/07/2026

好高興在 8 月 22 日能與大家一同前往海洋公園聚餐，陪伴大家度過了一個充滿笑聲、溫暖與感動的美好時光！✨

對很多人來說，去一趟海洋公園可能只是普通的週末行程；但對於我們的罕見病家庭與會員來說，每一次順利走出家門、擁抱戶外，背後都需要克服許多交通、醫療裝備與照顧上的挑戰。因此，能夠在「海龍王餐廳」的大型水族館旁聚首一堂，一邊欣賞海洋生物，一邊享受美食，真的非常難得與珍貴！🐟🍽️

特別感謝每一位用心參與的會員和家人，您們的堅韌與笑容就是我們最大的動力；同時亦非常感謝所有無私付出的工作人員、志工團隊，以及海洋公園的貼心安排，讓整個行程無比順暢、安全又充滿驚喜。🥰

以下想跟大家分享我們會員在活動後發自內心的真摯感想，希望將這份溫暖與正能量傳遞給每一個人：❤️👇

We were absolutely thrilled to gather at Ocean Park on 22 August 2026 for a wonderful day filled with laughter, warmth, and unforgettable memories! ✨

For many, a day trip to Ocean Park might seem like a regular weekend outing. But for our rare disease families and members, every step outside the home to embrace the outdoors means overcoming immense challenges—from accessible transport and complex medical equipment to intensive care routines. That is why gathering together right beside the grand aquarium at Neptune's Restaurant, enjoying delicious food surrounded by vibrant marine life, was a truly precious and extraordinary moment for all of us! 🐟🍽️

A heartfelt thank you to all our members and their families for joining us—your resilience and bright smiles are our greatest motivation. We also extend our deepest gratitude to our selfless staff, incredible volunteers, and the Ocean Park team for their thoughtful arrangements, ensuring the entire trip was smooth, safe, and full of wonderful surprises. 🥰

Below, we are delighted to share some heartfelt feedback from our members following the event. We hope these touching stories bring warmth and positive energy to each and every one of you! ❤️👇

「We are already back from the ocean park. It was such a happy trip. We all enjoyed it so much. Everything went very very well. All the FSMA people were so helpful and caring as always. We were all excited to see the diver in the aquarium feeding the fish. My son was unexpectedly very calm and peaceful and happy today. And that gave me a lot of peace of mind to enjoy the trip too. Thank you and FSMA for inviting us today and for all the effort to make it such a success🙇🏻‍♀️🙇🏻‍♀️🥰🥰」

「衷心感謝脊髓肌肉萎縮症慈善基金舉辦這次海洋公園一日遊活動。平時我們出門需要比較多準備，這次難得有機會跟各位聚在一起到戶外散散心，大家都玩得十分開心。

特別想感謝基金會貼心地全額贊助我們的來回車費。有合適的交通安排，大大減輕了我們出行上的不便與負擔，讓我們可以很安心、順暢地往返海洋公園。

這次活動的餐飲安排亦非常用心，大家在「海龍王餐廳」享用了一頓很豐富的午餐。一邊看著水族館裡的海洋生物，一邊品嚐美食，餐廳的食物品質很好、味道十分吸引，大家讚不絕口，吃得相當滿足。

最驚喜的是，沒想到基金會工作人員還細心地為我準備了驚喜慶生，大家一起幫我慶祝生日。這份心意讓我感到非常溫暖，也為這次活動增添了難忘的回憶。

再次感謝基金會全體工作人員與志工的用心安排和照顧，希望日後還有機會參與這類有意義的活動！」

「多謝FSMA邀請我們參加7月22日的海洋公園活動，一齊去去食午餐，大家互相交流，並得到了十分好的資訊。

好多謝安排了輪椅的士接送，令我們更加一切順利。

當日到達後又第一次感受到VIP待遇，先是沒有門票有人帶領下經過保安區、閘口區、直入餐廳，安定坐下FSMA職員葉生才幫手一次過辦理門票手續，一次特別的體驗。」

「好耐冇去過海洋公園啦，水族館啲魚好靚呀！！！今日餐飯都好好食，我最鍾意食芭菲，可以一邊睇住啲魚一邊食飯真係好正呀，有時仲可以見到潛水員喂魚，估唔到今日咁啱有人生日，嗰兩個蛋糕又好睇又好食，多謝晒！」

23/07/2026

【脊髓肌肉萎縮症慈善基金 x 兒童癌病基金 】 跨越照護界限，共建兒童紓緩服務網絡

過去三年，我們很榮幸一直支持 @兒童癌病基金 推行「賽馬會紓緩童行計劃」，共同關注香港兒童紓緩服務的發展。

作為計劃的壓軸活動，「賽馬會紓緩童行計劃 2026亞洲兒童紓緩服務研討會」將於今年九月舉行。

本研討會以「跨越照護・共築希望：開拓兒童紓緩療護無界之路」為主題，內容包括：
- 國際專家分享： 國際兒童紓緩網絡（ICPCN）行政總裁 Julia Downing 教授將發表主題演講
- 專業議題交流：探討預設照顧計劃、生命晚期倫理、跨專業協作及專業哀傷等重要議題
- 跨地域對話：促進香港及亞洲地區同儕對話，分享兒童紓緩療護的實踐經驗與服務方向

歡迎醫療、社福、教育及相關界別的同工登記參與 。
活動詳情：
日期：2026年9月5及6日（星期六及日）
時間：上午 9:30 – 下午 5:00
地點：香港尖沙咀廣東道3號 海港城 馬哥孛羅香港酒店 百年廳 （設有線上直播）
語言：英語（設有 AI 簡體中文即時傳譯）
費用：全免
活動網頁及報名：https://cpcf.ccf.org.hk/jccpc_asiasymposium2026/
專業進修： 提供醫生、護士、職業治療師及物理治療師專業進修學分（詳情請參閱活動網頁）
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#兒童癌病基金 #賽馬會紓緩童行計劃 #香港賽馬會慈善信託基金 #兒童紓緩服務 #2026亞洲兒童紓緩服務研討會 #跨專業協作 #跨越照護共築希望

【Families of SMA Foundation x Children’s Cancer Foundation 】 Joining hands to support children’s palliative care beyond boundaries

Over the past three years, we have been honoured to support ’s Cancer Foundation in taking forward the "Jockey Club Children's Palliative Care Project", contributing to the development of children’s palliative care in Hong Kong.

As the capstone event of the project, the “Jockey Club Children’s Palliative Care Project 2026 Asia Children’s Palliative Care Hybrid Symposium” will take place this September.

Under the theme "Bridging Care, Building Hope: Boundless Palliative Pathways for Children", the symposium will feature:
- Global Perspectives: A keynote address by Prof. Julia Downing, Chief Executive of the International Children’s Palliative Care Network (ICPCN).
- Professional Exchange: In-depth discussions on Advance Care Planning, end-of-life ethics, multidisciplinary collaboration, professional grief, and other key topics.
- Regional Dialogue: Opportunities for peers from Hong Kong and across Asia to exchange frontline insights and practical experiences.
We warmly welcome healthcare, social welfare, education, and related professionals to register .

Event Details:
Date: 5 & 6 September 2026 (Saturday & Sunday)
Time: 9:30 a.m. – 5:00 p.m.
Venue: Centenary Ballroom, Marco Polo Hongkong Hotel, 3 Canton Road, Harbour City, Tsim Sha Tsui, Hong Kong (Live Streaming Available)
Language: English (with AI simultaneous translation in Simplified Chinese)
Fee: Free of charge
Event page & Registration: https://cpcf.ccf.org.hk/jccpc_asiasymposium2026/
Professional Accreditation: CME / CNE / CPD credits will be available for doctors, nurses, occupational therapists, and physiotherapists (please refer to the event page for details)
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09/07/2026

💙 「社區護理的核心，在於紓緩照顧者真實面對的壓力」—— 註冊護士義工Lia Hui

「參與這次家居探訪，徹底改變了我對社區護理的看法。看到一名需要呼吸機（BiPAP）、鼻導管氧氣及鼻胃喉的早產兒童，讓我深刻意識到這些家庭在承受多麼沉重的壓力。跨專業團隊包括計劃總幹事、護士、技術人員和線上專科醫生，有著嚴謹的合作流程，從生命體徵、皮膚、營養狀況、排泄、活動能力、口腔健康、胃喉到藥物管理，都進行全面評估。但最令我觸動的，是團隊超越清單以外的檢查。」

「當得知醫療儀器頻繁的警報聲讓照顧者媽媽長期無法入睡時，我深切體會到：如果照顧者已經身心俱疲，即使患者臨床指標再穩定，也失去了意義。團隊即時協助處理警報問題，並透過脊髓肌肉萎縮症慈善基金（FSMA）資助送藥，減免一半費用，這才是真正、全方位的實質支援。由於家庭無法負擔上門物理治療師的費用，團隊更建議父母利用機構的物理治療資源自主學習復康運動，並透過緊密溝通確保家長完全理解。」

「這次經驗讓我明白，社區護理的核心在於紓緩照顧者真實面對的壓力，並陪伴他們走過複雜的護理之路。」
—— 註冊護士義工 Lia Hui

🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟
這段真摯的分享，道出了恩慈醫療計劃（MMM）的核心意義。大多數脊髓肌肉萎縮症（SMA）的兒童及成人患者都無法獨立行走，需要長期使用輪椅、臥床，甚至留在家中。在需要醫療援助、前往公立醫院專科門診或急症室時，患者與照顧者往往面臨巨大的壓力和困難，這在醫療系統壓力爆煲時尤其嚴峻。

關於恩慈醫療計劃（Mercy Medical Management - MMM）
為了解決SMA及其他面對類似問題患者的困境，MMM 計劃由專科醫生帶領，組織跨專業外展團隊，為需要科技儀器的患者提供「家居醫院」服務。我們直接將專業醫療送上門，包括：
* 🩺 醫生評估（探訪前及探訪期間）
* 👩‍⚕️ 上門註冊護士（RN）護理及身體檢查
* 💨 呼吸機參數、耐受性及管路安全檢查（僅限使用家居呼吸機成員）
* 🧠 家庭健康教育（為家屬及外傭提供藥物及抽痰指導）
* 📈 進階夜間監測（包括夜間經皮二氧化碳監測及夜間三級睡眠測試）

脊髓肌肉萎縮症慈善基金（FSMA）能夠將免費的社區醫療服務，拓展至SMA以外的疾病，包括其他患有複雜醫療狀況的病童，實在是患兒福音。分享中的患者是一名早產嬰兒，伴隨着多種健康問題，需要依靠呼吸機來維持生命，並正在家中接受照顧。請大家支持FSMA。https://www.fsma.org.hk/donate💜

💙 "Community care is about easing real stressors" — Lia Hui, Registered Nurse (RN) Volunteer

"Participating in this home visit as an RN volunteer completely shifted my perspective on what community care really means. Seeing a preterm child relying on BiPAP, nasal oxygen, and an NG tube was a huge reality check on how much these families have to handle. The collaborative team followed a structured workflow, assessing everything from vitals, skin, nutrition, and output to mobility, dental health, tubes, and medications. Yet the true impact was how they looked beyond the checklist."

"Hearing that constant BiPAP alarms deprived the mother of sleep made me realize that clinical stability means little if the caregiver is burning out. Addressing those alarms, while using FSMA funds to deliver medications and halve their bill, felt like genuine, holistic support. Because the family couldn't afford a home physiotherapist, the team suggested the parents self-learn exercises using institutional PT resources, using closed-loop communication to ensure the parents understood the suggestions given."

"It taught me that community care is about easing real stressors and empowering families to navigate complex care."
— Lia Hui, RN Volunteer

🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟🌟
This powerful moving reflection captures the core mission of the Mercy Medical Management (MMM) Programme. Most patients, both children and adults suffering from SMA, are not independently ambulatory and are either wheelchair-bound, bed-bound, or house-bound. These patients and their caregivers face tremendous stress and difficulties when they need medical attention or if they need to attend outpatient clinics or A&E in public hospitals, a problem that becomes insurmountable when hospitals are overburdened.

About the Mercy Medical Management (MMM) Programme
To support patients with SMA or other similar diseases, the Mercy Medical Management (MMM) programme provides a medical specialist-led, inter-disciplinary "hospital-at-home" outreach service for technology-dependent patients requiring long term respiratory support. We bring vital clinical care directly to vulnerable families, including:
* 🩺 Doctor Assessments (before and during visits)
* 👩‍⚕️ On-site RN Nursing Care & physical examinations
* 💨 Ventilator parameters, tolerance, and circuits checking (with HMV members only)
* 🧠 Health Education for family members and domestic helpers (e.g., drugs and suction)
* 📈 Advanced Monitoring (Overnight Transcutaneous CO2 monitoring & overnight Level 3 sleep test)

It is amazing that Families of SMA (FSMA) is able to extend free community medical help to young children with medical complexities even beyond SMA disease. This infant is a pre-term baby with multiple issues on mechanical ventilation for life-support and being cared for at home. Please support FSMA.💪 https://www.fsma.org.hk/donate 💜

#恩慈醫療計劃

03/07/2026

大家一齊為我們的 SMA 朋友——心悅打打氣！💪✨我們真心為妳感到無比自豪及驕傲。心悅，加油！！！❤️

心悅：就算幾難都好，我都想衝一把試下
【緊貼 01新聞 】全文：https://www.hk01.com/sns/article/60364603?utm_medium=Social&utm_source=fbpost&utm_campaign=mama

#罕見基因病 #01社會新聞 #01新聞 #香港01
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立即下載 →https://hk01.app.link/App_FBHK01
報料請致電／WhatsApp 「01線報」：(852) 6511 0101

29/05/2026

活出力量（5）：打破魔咒，助人自助

我是周佩珊，是一名 SMA 一型患者，也是脊髓肌肉萎縮症慈善基金 (“FSMA”)的小編。

在以前沒有藥物治療的日子裡，SMA 一型是最嚴重、也最令人絕望的。高達 90% 的患兒會在兩歲前死亡，是最致命的兒童遺傳病之一。但我很幸運，在媽媽和醫護人員的悉心照料，以及許多人的支持下，我不單打破了這個「2歲魔咒」，還在 17 歲那年成功出院。後來，我更考上了港大英文系，成為全港首位港大碩士畢業的 SMA 一型患者。

這條充滿荊棘的路上，FSMA的創辦人及主席 - 霍博士是我家希望的啟蒙者。我們第一次見面是在廣華醫院，當時我只有 4 歲，天天只能看著醫院白茫茫的牆壁，看著隔壁床的院友一個一個出院回家，過上小丸子般的校園生活。當我和媽媽得知霍博士的兒子 Howard 也是一型患者，而且竟然可以出院回家時，一道希望之光從此照進我的世界——原來，我也有機會可以回家，不用在醫院悶死！

認識不久後，霍博士和媽媽就安排帶我去了海洋公園玩。那是我人生中第一次離開醫院出去見識世界。看著海豚表演跳躍、呼吸著外面的空氣，我當時心想：這個阿姨比天天幫我治療的醫生還要厲害呢！因為醫生從來沒有帶我出去玩過。雖然出院的夢想足足等到了 17 歲才實現，但真的很感謝霍博士，給了我們堅持下去的希望。

時至今日，雖然面對政府的收入限制，但我從未想過停下腳步。現在，我在本會擔任小編，也是兒童家居呼吸支援會（PHRESS）的兼職總幹事，我希望能用自己的知識和文字為有需要的家庭發聲，藉著工作回饋社會上許多幫助過我的人。同時，也盡一己之力「養家」，報答媽媽多年的辛勞，真正實踐助己助人。

只要心中有光，哪怕身體受限，我們一樣可以活出有力量、有貢獻的人生。

如果佩珊打破命運、回饋社會的故事感動到你，請支持本會，讓我們能繼續支援更多 SMA 患者及家庭，讓他們在逆境中看見希望。
立即捐款: https://www.fsma.org.hk/donate

Living Strong (5): Breaking the Curse, Helping Myself and Others

My name is Josy Chow. I have SMA Type 1, and I am also the social media editor for Families of SMA Foundation (“FSMA”).

In the past, before disease-modifying treatments were available, SMA Type 1 was the most severe and heartbreaking form of the condition. With up to 90% of infants could not see their 2nd birthday, it was one of the most fatal genetic diseases in children. But I was incredibly fortunate. Thanks to the dedicated care of my mum and medical team, along with the support of so many people, I didn't just break this "two-year-old curse"—I successfully left the hospital at the age of 17. Later, I even majored English Studies at HKU, becoming the first SMA Type 1 patient in Hong Kong to graduate with an HKU master's degree.

On this thorny path, Dr. Fok (Founder & Chairman of FSMA) was the one who sparked hope for my family. We first met at Kwong Wah Hospital when I was only four years old. Back then, all I could do every day was staring at the blank white walls of the hospital, watching the patients of the beds around me leaving for home and enjoying a school life just like Chibi Maruko-chan. When my mum and I found out that Dr. Fok’s son, Howard, was also a Type 1 patient and could actually live at home, a ray of hope instantly shone into my world. I envisioned my chance to go home instead of being bored to death in the hospital!

Not long after we met, Dr. Fok and my mum arranged a trip for me to Ocean Park. That was the very first time in my life leaving the hospital to see the outside world. Being able to watch the dolphins leap into the air and breathe in fresh air, I thought to myself, "this auntie is even more capable than the doctors who treat me every day! The doctors have never taken me out to play" Although my dream of being discharged took until I was 17 to finally come true, I'm profoundly grateful to Dr. Fok for giving us the hope to keep going.

Today, despite facing government income restrictions, I've never thought about slowing down. Currently, I help as a social media editor for FSMA and serve as the part-time Project Coordinator of the Paediatric Home Respiratory Support Society (PHRESS). I hope my knowledge and writing can speak up for families in need to return to the many people in society who have supported me along the way. At the same time, I want to do my best to support my family and repay my mum for her years of selfless devotion. Helping myself while helping others is my motto.

As long as there is light in your heart, even if you have immense limitations, you can still live an active life that is full of purpose.

If Josy’s story of defying the odds and giving back to society touches your heart, please support FSMA so we can continue helping more SMA patients and their families find hope in the face of adversity. 🙏🏻
Donate NOW: https://www.fsma.org.hk/donate

#活出力量

15/05/2026

活出力量（4）：多彩的大學生活

我是賴君怡，是SMA 二型患者，現正就讀中大中文系，享受著精彩的大學時光。

以前吃東西很容易感到疲倦，但自從接受藥物治療後，我的體能變得非常穩定，現在能一連吃下四隻雞翼，甚至能吞下整隻雞髀，可以自由享受美食。

穩定的體力賜予我豐富的校園生活。我能連續三天參與 Ocamp 迎新營，輕鬆地跟朋友行夜街，就算一天多次外出都沒有問題。熱愛畫畫的我現在可以坐著畫一整天，還有打機時的反應快了。最讓我難忘的是在一次體能測試中，我竟然親手打開了以前一直打不開的食物盒，讓身邊的人都驚訝得「O 晒嘴」。

這些點滴讓我明白，只要維持住肌力，我一樣能活出多彩的自我。

如果君怡對生活的熱誠感動到你，請支持 FSMA，讓更多 SMA 病友能更有力量地追尋夢想。
立即捐款: https://www.fsma.org.hk/donate

Living Strong (4): A Vibrant University Life

My name is Miyuki Lai, and I have Type 2 SMA. Currently, I am a student in the Department of Chinese Language and Literature at CUHK, where I am fully embracing the wonders of university life.

In the past, the simple act of eating would often leave me feeling exhausted. However, since starting medication, my physical stamina has become remarkably stable. Now, I can enjoy four chicken wings in one go—or even finish a whole drumstick! Being able to enjoy food freely is a simple joy I cherish.

This newfound stability has opened the door to a rich campus life. I’ve been able to participate in a three-day Orientation Camp (Ocamp), enjoy late-night outings with friends, and head out multiple times a day without worry. As someone who loves drawing, I can now sit and paint for an entire day, and I’ve even noticed my reaction time has improved when playing video games. One of my most unforgettable moments was during a physical assessment: I managed to open a food container by myself—something I could never do before. People around me were so shocked their jaws literally dropped!

These small victories have taught me that as long as I can maintain my muscle strength, I can live a life that is just as vibrant and colorful as anyone else’s.

If Miyuki’s passion for life inspires you, please support FSMA so that more SMA patients can find the strength to pursue their dreams.
Donate NOW: https://www.fsma.org.hk/donate

#活出力量

17/04/2026

🏜️ Mission Accomplished: 跨越 270 公里，見證生命奇蹟！
【在沙塵暴中挺進，圓滿達成撒哈拉壯舉！】

大家好，我們回來了！上週六，Winnie 同 Donald 順利在強烈沙塵暴之中，完成了 270 公里嘅艱辛賽事。

經過九天沙漠生活與馬拉松挑戰，雖然現在身心萬分疲累，正努力處理腳上的水泡、瘀甲、濕疹與感冒，抵抗力亦弱了不少，但內心卻充滿感恩。

Winnie 感言：
「我很感恩我的生命可以『選擇』、 『學習』和充滿『愛』。今次我選擇一個艱辛的沙漠之旅，從中學習認識自己，也從其他戰友身上學習。因為你們的愛，令我可以走下去完成比賽。」

這場長征最深層的意義，是幫助脊髓肌肉萎縮症（SMA）的朋友們。比起我們能「選擇」挑戰沙漠，SMA朋友們往往沒有選擇，每天都在面對比沙漠更嚴峻的考驗。

感謝大家一路以來的支持與打氣，是你們的愛，讓我們將這 270 公里的汗水，化作支持 SMA 朋友們的希望。

最後機會支持！捐款連結依然開放：
如果你們想支持 Winnie、Donald 和 SMA 朋友，請捐款到 FSMA：https://www.fsma.org.hk/donate
(凡捐款港幣$100或以上可獲收據申請扣稅 / All donations of HK$100 or above are tax deductible)

#脊髓肌肉萎縮症

13/04/2026

🏜️ Day 5 & 6：圓滿（最後42 & 21公里）
【達成！270 公里的結尾】
完成了！Winnie 和 Donald 成功完成 270 公里撒哈拉馬拉松，順利衝過終點！這 7 日來的挑戰雖然艱辛，但能為 Families of SMA Foundation 籌得善款，一切都非常值得。感謝每一位支持者的愛心，以及大家一路以來的支持。

如果你們想支持 Winnie、Donald 和 SMA 朋友，請捐款到 FSMA：https://www.fsma.org.hk/donate
(凡捐款港幣$100或以上可獲收據申請扣稅 / All donations of HK$100 or above are tax deductible)

#脊髓肌肉萎縮症

09/04/2026

🏜️ Day 4：突破
【終極考驗：100公里長征】
2026 MDS 最艱難的一環——100公里挑戰。Winnie 和 Donald 成功跨越了最長、最難的100公里賽段！看著終點就在不遠處，讓他們繼續堅持。感謝大家連日來的關注。

如果你們想支持 Winnie、Donald 和 SMA 朋友，請捐款到 FSMA：https://www.fsma.org.hk/donate
(凡捐款港幣$100或以上可獲收據申請扣稅 / All donations of HK$100 or above are tax deductible)

#脊髓肌肉萎縮症

08/04/2026

🏜️ Day 3：堅持（29公里）
【超越肉體痛苦，為生命而跑】
累積里程已破百！進入第三日，在這片無盡的荒漠中，Winnie 和 Donald 依然互相扶持。對他們來說，這不只是一場比賽，更是為了讓更多人關注脊髓肌肉萎縮症（SMA）的使命。

如果你們想支持 Winnie、Donald 和 SMA 朋友，請捐款到 FSMA：https://www.fsma.org.hk/donate
(凡捐款港幣$100或以上可獲收據申請扣稅 / All donations of HK$100 or above are tax deductible)

#脊髓肌肉萎縮症