09/29/2020

Families of SMA Charitable Trust is conducting our Raffle Ticket Sales as from 27 October 2020 to 18 December 2020 (Note: The ticket will be sold on 27 October 2020). Each ticket costs HK$30. All proceeds will be used towards our mission to help in the relief of hardship and suffering of children afflicted with SMA and their families. Please support our Raffle campaign and share your love with them. If interested, please contact 2811 1767 or email info@fsma.org.hk. 

08/23/2020

We are very pleased to announce that the webinar “SMA Treatment: Latest Update”, jointly organized by Families of SMA (Spinal Muscular Atrophy) Charitable Trust and Hong Kong Neuro-Muscular Disease Association Limited, was successfully conducted on 22 August 2020. For this webinar, our special thanks go to the two invited expert speakers, Dr. Sophelia Chan Hoi Shan and Dr. Michael Fu Yat Pang (Please refer to poster below). Of course, we are very grateful to all participants joining that day, and we hope everyone can benefit from this webinar.

05/25/2020

What would you do when faced with a challenge – give up or overcome it? The mother of a Type 1 SMA patient, Liu Tze Fei, chose not to give up on her daughter, although she understood that the path for Tze Fei would not be easy and might even be hopeless. She insisted on raising Tze Fei by herself. Patients with Type 1 SMA normally cannot live more than two years. Under the care of her mum and with support from FSMA, Tze Fei is now five years old. Tze Fei’s mum reads her stories, plays musical instruments, does exercise with Tze Fei, and takes her out for a “walk” every day. She believes that as long as she doesn’t give up, there may be a miracle in the future.

With the support of Biogen, FSMA turned the stories of various SMA patients and their family members into video clips. FSMA hopes that people in Hong Kong can stay positive and not give up, no matter how difficult the future might be.

05/25/2020

“With love, nothing is too difficult.” With this belief, Wenus turned the worry and sadness she felt about her son Marcus’ diagnosis of Type 1 SMA into motivation for taking care of her son. To provide more exercise opportunities for Marcus, she used her fertile imagination to create many innovative exercise tools. She used water pipes and fabric to build a frame so Marcus can move his arms when he is sitting. She hopes one day her persistence will make her dream come true, and Marcus will walk to her and give her a hug and a kiss.  

With support from Biogen, FSMA turned the stories of various SMA patients and their family members into video clips to encourage people in Hong Kong to stay positive during difficult times.

05/14/2020

FSMA’s website has been created since the charity’s establishment. With technological advancement, we see a need to revamp FSMA’s website, so that FSMA can effectively raise awareness and education towards SMA.

We call for your generous donation to sponsor FSMA’s website upgrade, so that more people can understand the disease and FSMA can reach those who are affected by SMA.
If you are interested in donating and supporting this cause, please don’t hesitate to contact us by phone 2811 1767 or email info@fsma.org.hk.

04/15/2020

The double impact of the socio-political unrest and the outbreak of Covid-19, has sent shockwaves through Hong Kong’s nonprofit sector and the vulnerable communities we serve.

We are one of 174 Section 88, non-subvented nonprofit signatories to an Open Letter To Funders, calling for their support for Hong Kong’s most marginalised communities.

Read the letter here https://bit.ly/ngo_openletter, share and like our post to pledge your support!

#SpiritOfCollaboration

#FightTheVirusTogether

#SupportHongKongTogether

#PhilanthropyForCovid19

03/25/2020

With unwavering perseverance and “The Strength of Two”, Josy Chow and her mother overcame many challenges in life, one after the other – from living beyond the age of two, to achieving Josy’s dream of attending university.

Families of Spinal Muscular Atrophy Charitable Trust (FSMA) and Biogen have produced a series of videos to recount the intimate stories of four SMA patients who have bravely overcome the challenges brought by SMA. Their stories convey their “Power of Perseverance” to the local community.

More videos will be launched in May. Stay tuned. Enjoy!

02/18/2020

Special thanks to Ng Teng Fong Charitable Foundation for a donation of 2500 face masks for our patients and family members.

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02/06/2020

Families of Spinal Muscular Atrophy Charitable Trust (FSMA) and Biogen produced a series of videos to recount the intimate stories of four SMA patients, who bravely overcome challenges brought by SMA. Their stories convey their “Power of Perseverance” to the local community.

“The Ball that Can’t Be Thrown” (Click to watch the video) recounts how Ho Yuen Kei overcome challenges in life and now become the World’s No.2 Boccia Athlete is the first video of the series.

Other videos will be launched in coming weeks. Stay tune. Enjoy!

01/22/2020

Morgan Stanley Volunteers brought Chinese New Year Hampers and Cheers to our young SMA patients at their homes

01/13/2020

As part of our SMA Awareness & Education Campaign, we are honoured to introduce “The Power of Perseverance” picture book series – comprising a set of four appealing and inspirational picture books. The books recount heart-warming stories of four SMA patients, who have bravely overcome challenges brought on by SMA, and the compelling bonds of love and care between these patients and their family members. 

The books are simply written and designed to appeal to children who love reading and also to those who enjoy illustrated books. They instill positive attitudes and fortitude in facing adversities in life.

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01/13/2020

As of 1st October 2019: Professor. Sophia Chan Siu Chee, Secretary for Food & Health is our PATRON.

01/02/2020

1. Raffle draw was held on 28 December, 2019 at the office of the charity.

2. All winners must register during office hours at 2811 1767.

3. All prizes must be claimed before 3 February, 2020 and collected at Room 1402, 14/F, SUP Tower, 83 King’s Road, North Point, Hong Kong. Failure to do so will constitute forfeiture. All prizes are not redeemable for cash.

4. Winners should present their ticket when collecting prizes.

5. Winners must be of age 18 OR above to claim the prizes.

12/19/2019

Families of SMA Charitable Trust is conducting our Christmas Raffle Ticket Sales as from 18 November, 2019 to 28 December, 2019. Each ticket costs HK$30. All proceeds will be used towards our mission to help in the relief of hardship and suffering of children afflicted with SMA and their families. Please support our Christmas Raffle campaign and share your love with them.

09/27/2019

Special thanks to Arrow Asia Pac Ltd for inviting our SMA patients to their laboratory and office in Science Park for a very informative visit and review of high tech devices, followed by a wonderful buffet lunch. Thank you Arrow Asia Pac Ltd and SMA friends and families for an amazing day!

04/11/2019

Families of SMA is thrilled to continued received an incredible donation from Mr YEUNG Chun Wing in the amount of HK$100,000. ". In recognition of Mr YEUNG's generosity, Cheque Presentation was held on 12 April 2019. Our Founder & Chairman Dr Mei Ling Fok, Trustee Ms Ruby Wan, and Executive Committee Members expressed her heartfelt gratitude to Mr YEUNG for his generous support. Yeung Lap Man Educational Fund " was set up in the name of Mr YEUNG’s late father, the establishment of this educational fund would enhance our members’ learning ability, as well as enable their whole person development through home-based tutorial service and recreation activities.

03/21/2019

To help in the relief of hardship and suffering of patients afflicted with Spinal Muscular Atrophy (SMA) and their family members, Families of SMA Charitable Trust is thrilled to collaborate with HK01 and recently started a charity donation programme on “01Heart” platform. To support us, please login HK01 (please watch the instruction video https://youtu.be/cyQaZz1g-JE) and visit our 01Heart platform page (Programme link: https://bit.ly/2VwE7JL). You can make your donation online. A donation receipt with our charity logo will be generated automatically to your email from HK01 upon completion. All donations over HK$100 are tax deductible.

01/21/2019

Special thanks for Police Dragon Boat Club for cordially inviting us to their Hong Kong Police Force 175th Anniversary Open Day on 19th January. This year the Anniversary open day was held at the School of Foundation Training of Police College at Aberdeen. We would like to thank Police Dragon Boat Club for their continuous support!

01/04/2019

1. Lucky draw was held on 29 December, 2018 at the office of the charity.
2. All winners must register during office hours at 2811 1767.
3. All prizes must be claimed before 5 February, 2019 and collected at
Room 1402, 14/F, SUP Tower, 83 King's Road, North Point, Hong Kong.
Failure to do so will constitute forfeiture. All prizes are not redeemable for cash.
4. Winners should present their raffle tickets when collecting prizes.

12/03/2018

Mrs. Elaine Ma’s new cook book “Cooking with Elaine 3” was launched on 23rd November 2018 when an autograph ceremony was held. All proceeds of the book sale will be donated to three charity organisations and FSMA is one of the beneficiaries. On behalf of FSMA, Executive Committee members Ms. Wanda Tong and Mr. Peter Chung, Trustee Ms. Ruby Wan and Chief Executive Officer Mr. William Cheung, presented a Certificate of Appreciation to Mrs. Ma for her generosity.

11/27/2018

Invited by Office of the Chief Executive, over 60 Families of SMA Charitable Trust members and families visited the Government House on 24th November, 2018. The Chief Executive, Mrs. Carrie Lam, came out to receive the party and talked to every patient member. She has shown great concern about the health and wellbeing of SMA patients. Mrs. Lam also took picture with each of our members. She is also concerned about the work of FSMA and encourages us to provide better services to our patient members.

11/22/2018

With the support from Dragages Hong Kong Limited, Families of SMA Charitable Trust organized a joyous annual gathering party on 10 November 2018 at Sleeping Beauty Ballroom in Hong Kong Disneyland Hotel. Participants not only enjoyed the food, but also won prizes from lucky draw and game sessions. Besides the generous sponsorship from Dragages Hong Kong, we were glad to receive support from Hong Kong Disneyland Resorts for sponsoring complimentary tickets to Disneyland Park. Participants went into a magical kingdom and enjoyed their magic trip gleefully.

11/18/2018

The column of “Refusing to atrophy in life takes courage” written by Mr. Terence Chang Cheuk-cheung has been published. The column shares a story of life and experiences of Families of SMA Charitable Trust (FSMA) member Yeung Siu On. For more information, please click into the following link: http://www.thestandard.com.hk/section-news.php?id=202289&story_id=50024838&con_type=1&d_str=20181115

11/14/2018

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11/04/2018

Congratulations again to Chow Pui Shan, member of Families of SMA Charitable Trust (FSMA), for being named a “Regeneration Warrior” in the 21th Top Ten Warriors of Regeneration Awards, an annual event organized by the Regeneration Society. 

10/14/2018

At the Indonesia 2018 Asian Para Games, Families of SMA Charitable Trust member Ho Yuen Kei and her teammates Tsang Ling Yan and Tse Tak Wah won a Gold Medal in the Boccia BC3 Mixed Pairs, by beating Singapore with a score of 4-2.

10/10/2018

SMA patient Chow Pui Shan hopes the government provides more support to grass-root patients.

10/10/2018

At the Indonesia 2018 Asian Para Games, Families of SMA Charitable Trust member Ho Yuen Kei won a Bronze Medal in the Boccia Individual Game by beating Thai athlete Tanimpat Visaratanunta, Yuen Kei successfully bagged a bonze medal with a score of 6-0.

10/08/2018

The Indonesia 2018 Asian Para Games takes place in Jakarta, Indonesia from 6 to 13 October. Families of SMA Charitable Trust member Ho Yuen Kei represents Hong Kong in the boccia competition. Let’s support Yuen Kei and the Hong Kong Delegation athletes!

10/04/2018

Hong Kong, 2 October 2018 – The Hong Kong Department of Health (DOH) has granted registration approval for SPINRAZA (nusinersen) for the treatment of Spinal Muscular Atrophy (SMA), a leading genetic cause of death in infants and toddlers that is marked by progressive, debilitating muscle weakness.

In response to the need for treatment for individuals living with SMA, Biogen sponsored the preapproval Expanded Access Program (EAP) for SPINRAZA in Hong Kong free of charge in May 2018. The EAP has led to the initiation and continuation of treatment for nine eligible individuals with infantile-onset SMA (Type 1) in Hong Kong. As with similar programs in other parts of the world, the EAP in Hong Kong will cease after DOH approval of SPINRAZA in Hong Kong. This means no new cases will be initiated under the EAP, but patients already in the program will continue to receive the treatment free of charge until the Hong Kong government-initiated SPINRAZA access arrangement is ready in December 2018.

09/26/2018

Congratulations to Families of SMA Charitable Trust (FSMA) as its new book “Love Never Ends” has won the Best Medical & Health Book of the Hong Kong Golden Book Awards 2018, which is known as the “Oscar of Hong Kong publication.” The Hong Kong Golden Book Awards ceremony was held on 27th September 2018 (Thursday) at Plaza Hollywood in Diamond Hill. FSMA members Ho Yuen Kei and Yeung Siu On received the Award on behalf of FSMA. Ms. Maria Wong, Executive Committee Member of FSMA and Mr. William Cheung, Chief Executive Officer, also attended the ceremony.

09/20/2018

Congratulations to Chow Pui Shan, member of Families of SMA Charitable Trust (FSMA), winning the Overcoming Personal Challenge Award of the 6th Spirit of Hong Kong Awards, which is organized by the South China Morning Post (SCMP). Overcoming Personal Challenge Award represents an honour to people who have inspirational journeys to achieve a dream, or the extraordinary. The 6th Spirit of Hong Kong Awards ceremony was held on 21st September 2018 at Conrad Hotel Hong Kong. Dr. Mei Ling Fok, Ph.D, Founder & Chairman of FSMA and Mr. William Cheung, Chief Executive Officer also joined the ceremony with Pui Shan to give support and encouragement. Our congratulations and thank you to Pui Shan for her strenuous effort and contribution to the community and SMA patients.

09/19/2018

Understanding that SMA families were eager to learn more about information related to new drugs and health care, FSMA organized a New Drug “SPINRAZA” Sharing Session at the Cityview Hotel on 2nd September. Parents of SMA patients who have been receiving treatment with the new drug SPINRAZA were invited to share their experience during the treatment. More than 80 members and their families attended the event. We were greatly honored and thankful to have Dr. C.C. Luk, Cluster Chief Executive of Hong Kong West Cluster, joining our event.

09/18/2018

Families of SMA Charitable Trust (FSMA) is thrilled to have taken part in the RTHK radio programme Colourful Journey. Our Trustee, Ms. Ruby Wan, and our member, Ms. Ho Yuen Kei, were interviewed in the programme. They briefly introduced about Spinal Muscular Atrophy (SMA) and shared the journey and hope of FSMA and SMA patients. To listen to the full programme, please click the below link: http://podcast.rthk.hk/podcast/item_epi.php?pid=638 .

08/27/2018

Families of SMA is thrilled to have received a designated fund donation raised by HKSH Village Volunteers in an amount of HK$367,500. The fund raised will be used to support the“Give Love to the Disadvantaged 2018” project organised by our Trust for the provision of medical equipment and wheelchairs to SMA patients.  The Cheque Presentation was held on 28th August 2018 at Banquet 38, Hong Kong Sanatorium & Hospital. Our Trustee, Ms. Ruby Wan expressed her heartfelt gratitude to HKSH Village Volunteers for their generous donation and support.

07/21/2018

FSMA 20th Anniversary Celebration and Book “Love Never Ends” Launch Ceremony was held on 22nd July at the Hong Kong Convention and Exhibition Centre. We were greatly honored and thankful to have Mrs. Carrie Lam, GBM, GBS, the Chief Executive of HKSAR as our Officiating Guest.

07/21/2018

Spinal Muscular Atrophy (SMA) is a rare and fatal genetic disease with no drugs for cure...

07/13/2018

With the sponsor and support from Morgan Stanley Asia Limited, Families of SMA once again organized “Tropical Summer Party” on 14 July 2018 at Gold Coast Hotel Hong Kong.

05/13/2018

【拉闊有話兒】母親節快樂！一位母親養育孩兒所費的心力不用多介紹，更何況是一位要照顧患有脊髓肌肉萎縮症 (SMA) 病童的母親？她對孩子的寄望很簡單：活！下！去！

05/13/2018

新聞| 都市日報

05/05/2018

要聞港聞| 星島日報

05/05/2018

要聞港聞| 昔日東方

05/05/2018

港聞| LINE TODAY

05/05/2018

港聞| 新浪香港

05/05/2018

即時新聞| RTHK.HK

05/05/2018

新聞| 文匯快訊

05/05/2018

快訊| 文匯快訊

05/05/2018

時事脈搏| Now新聞

05/05/2018

時事脈搏| 信報

05/04/2018

健康| Yahoo！新聞

05/05/2018

A6 |港聞| Wen Wei Po

05/05/2018

A8 |港聞| Sing Tao Daily

05/05/2018

A20 |港聞| Oriental Daily News

‘Lions Club of the Peak Charity Carnival 2018’, (hereinafter referred to as "The Carnival") a charity fundraising event co-organized by the Lions Club of the Peak Hong Kong and Families of SMA Charitable Trust (FSMA) was held on 5 May 2018 at the Lions College located in Kwai Fong.  The Carnival had raised over HK$80,000 for FSMA to help the SMA victims and their families and promote public awareness.

04/24/2018

We proudly announce our founder, Dr. FOK Mei Ling has been appointed Chairman of FSMA with effect from 18 April 2018.  With the depth and breadth of Dr. Fok’s understanding of Spinal Muscular Atrophy, her great passion and many years of experience in helping SMA patients and their families in alleviating their hardship and suffering brought about by the SMA disease, we are sure FSMA will soar to new heights under her leadership.

03/24/2018

活動超過200位養和醫院員工及親友今日（3月25日）參與第十屆「健步樂行獻愛心」步行籌款活動，為「脊髓肌肉萎縮症慈善基金」(Families of SMA (Spinal Muscular Atrophy), 簡稱FSMA) 籌得港幣36 萬多元，協助脊髓肌肉萎縮症患者購置維生及改善生活質素的設備及特製輪椅。

謝謝各位養和醫院員工、親友及義工！

03/01/2018

The Standard | 2018-03-02

03/01/2018

City | 2018-03-02

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03/01/2018

蘋果日報 | 2018-03-02

報章 | A12 | 港聞 |

03/01/2018

大公報 | 2018-03-02

報章 | A04 | 要聞 |

03/01/2018

蘋果日報 | 2018-03-02

報章 | A12 | 港聞 |

03/01/2018

東方日報 | 2018-03-02

報章 | A23 | 港聞 |

01/01/2020

成報 | 2018-03-02

報章 | A08 | 港聞 |

03/01/2018

文匯報 | 2018-03-02

報章 | A04 | 2018-19財政預算 |

03/01/2018

香港商報 | 2018-03-02

報章 | A14 | 香港新聞 |

11/25/2017

張偉麟表示：「如果我們去到『能者可付』概念，即是家境較好，負擔可能多些，但都是一個可負擔範圍內，不會令他不斷蒸發他的資產，令其生活水平急速下降。要服用一世，當然長遠要照顧。看到的是，不可以不斷要整個家庭同等支付，可能要遞減，按年份要遞減，或百分比有不同。」

11/20/2017

政府早前透露，正就引進治療脊髓肌肉萎縮症（SMA）藥物與藥廠商討。醫院管理局聯網服務總監張偉麟今天被問到，患者是否明年可用藥，他表示預計明年會有突破，對進度感到樂觀。另外，現時醫管局正就檢討資助極昂貴藥物的機制，張指出目前方向不止涵蓋罕有病，糖尿病等使用醫學療法的患者亦受資助。

10/10/2017

醫管局會檢視現行病人分擔藥費的安排，以便透過關愛基金醫療援助計劃資助指定病人使用極度昂貴的藥物；並會探討不同方案，資助合適的病人參與藥商就特定藥物治療提供的恩恤用藥計劃。

10/27/2017

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10/29/2017

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