【Press release】 FSMA Strives with Patients and Families to Bring in New Drugs for Treatment Celebrat

Heartfelt Thanks for CE’s Foreword and Andy Lau’s Calligraphy of the Book Title

For more photos, please click into the link and download︰https://bit.ly/2O94zXe

(22 July, 2018, Hong Kong) Spinal Muscular Atrophy (SMA) is a rare and fatal genetic disease with no drugs for cure. Patients can only accept their fate and gradually weakened health. A new drug for treatment, however, was launched in the United States in late 2016. SMA patient Josy Chow Pui Shan, a Hong Kong University student spent 4 months preparing a 100-page proposal with only two fingers, teaming up with other patients to persuade the government to introduce a new drug for SMA treatment in October 2017. The Hong Kong Chief Executive Mrs. Carrie Lam promptly responded and proactively negotiated with the pharmaceutical company to bring in the drug. Later in March 2018, the government announced that the new drug will soon be registered, giving one more treatment option to SMA patients in Hong Kong.

This astonishing miracle is attributed to a group of patients and families from Families of Spinal Muscular Atrophy Charitable Trust (FSMA), they never give up hope. Today, the trust celebrated its 20th anniversary and held the launch ceremony for the new book "Love Never Ends" at the Hong Kong Book Fair. The Honorable Chief Executive Mrs. Carrie Lam writing the foreword for the new book, officiated the ceremony.

Mrs. Carrie Lam spoke at the ceremony, mentioning that the government always pays attention to the patients with rare diseases and their wellbeing. The government will continue to work with the Trust to provide appropriate treatment and services for SMA patients. "The heart-touching stories collected in this book not only deepen our understanding of SMA, they also showcase the persistent spirit of SMA patients and their families."

Dr. Fok Mei Ling, founder and chairman of FSMA indicated that the Trust has been persistently looking for treatment and an eventual cure for SMA over the last 20 years. They have experienced success and failure in fighting with SMA in all these years, as well as a lot of pain and sufferings from the patients and families. However, all the work done aims at raising the society’s awareness towards this rare but debilitating genetic disease. She depicted the story of her son with SMA Type I and the story behind the establishment of the Trust in the new book. “We would like to express our thanks and respect to our SMA friends and their families who courageously strive to live full lives. Despite of various challenges and difficulties, they are willing to share their stories to capture the awareness of Hong Kong people towards SMA, as well as further promote the trust’s development.”

SMA patients overcome challenges and shine in their lives

"Love never ends" presents 12 true stories of the SMA patients and families. Life has in store challenges for them, yet they overcome the difficulties with their strong spirit to make the “impossible” work. There are also stories about the SMA patients’ parents who embrace life and pain, loving and caring about their children. Some of our heroes attended the book launch ceremony. Among them, Chow Pui Shan, a HUK student fighting for the patients’ benefits shared how she survived risky surgery, and how she strived to be admitted by HKU. "I always believe that I can do it. It is already a great miracle for me to live to this day! Fighting with the disease for years, I understand well the sufferings brought by it, I want to do my best and bring hope to others!"

Ho Yuen Kei, a Paralympic Boccia player represented Hong Kong in the Rio Games, has used her hands to "roll out" a wonderful life in the past ten years. Her motto is - "If you are able to, you must always give your best." "In 2011, my hands could not function well to throw the ball due to my deteriorating health. The coach suggested me to change to another team, throwing the ball with the help of an assistant and some tools. It wasn’t easy, I had thought about giving up my sports career, but my friends were supportive and they encouraged me. They told me not to forget my goal and passion. I eventually went to the Olympics in 2016." She recently became a food blogger, setting up her internet page to introduce different wheelchair-friendly restaurants.

Tam Wing Hang is about to study a Master’s degree in Theology at The Chinese University of Hong Kong. But when he was a kid, he always tried to escape from school because he had no focus in his life, nor enthusiasm. Until later, he found his faith and direction and he is on his journey of being a preacher, "I believe I have the ability to decide my path and live my own life. Everyone is indeed unique."

Lau Shiu Fung, a graduate from the school of Engineering, the Hong Kong Polytechnic University, has won numerous awards for innovation and technology. He is nicknamed as the "Iron Man" in the SMA circle. He developed a software application "WheelMan" to provide information on barrier-free facilities for those with similar difficulties. He hopes to improve the world with technology. “Disability does not mean that you have to hide yourself. You can still enjoy life, go shopping, hanging out, enjoying dining and movies. I hope that one day, I can develop mechanical feet to help people like me to stand up again."

Lee Kai Leung, once named by the media as "disabled scholar", experienced repeated setbacks when he started to develop his career path. He later participated in FSMA's "Home Office Project", learning web design, animation and other skills to equip himself. He finally got his chance - Dragages Hong Kong hired him as an administrative assistant 7 years ago. "My company identifies my capability and assigns more important work to me, giving me great sense of satisfaction. I always believe that as long as I have the ability, I will eventually be recognized."

Promote public awareness towards SMA and helping patients to realize their dreams

Dr. Fok Mei Ling hopes that this book will arouse public awareness and understanding towards SMA, helping the Trust to further develop and SMA patients to visualize their dreams. She has high hope towards the new drug Spinraza, which has been adopted by the government into the Community Care Fund (CCF) Medical Assistance Programme. Those patients found suitable for the treatment after doctors' assessment, can apply to CCF for subsidization in case of financial difficulty. FSMA will follow up closely to provide appropriate assistance to the patients and families.

Photo 1

Photo 2

Photo 3

Photo 4

Mrs Carrie Lam Cheng Yuet-ngor, Chief Executive of the HKSAR and Professor Sophia Chan, Secretary for Food and Health, attend FSMA 20th Anniversary Celebration & "Love Never Ends" Book Launch Ceremony today and mingle with the SMA patients.

Dr Fok Mei Ling, founder and chairman of FSMA says, “We would like to express our thanks and respect to our SMA friends and their families who courageously strive to live full lives. Despite of various challenges and difficulties, they are willing to share their stories to capture the awareness of Hong Kong people towards SMA, as well as further promote the Trust’s development.”

A group of SMA patients presents a thank you card to Mrs Carrie Lam Cheng Yuet-ngor, Chief Executive of the HKSAR, expressing their gratitude to the government for bringing new hope to the patients.

Mrs Carrie Lam Cheng Yuet-ngor, Chief Executive of the HKSAR (6th from left, 2nd row), Professor Sophia Chan, Secretary for Food and Health (4th from left, 2nd row), Dr Fok Mei Ling, Founder and Chairman of FSMA (middle) and other guests host the cake-cutting ceremony and kick-off the new book launch.

To celebrate FSMA’s 20th anniversary this year, the Trust launches a new book, “Love Never Ends”, which compiles 12 touching stories of the SMA patients.

7-year-old Marcus Ng Pak Lam (right) was diagnosed with SMA at the age of 1.5 years old. He has been receiving SPINRAZA treatment and making good progress. His mother, Ms Wenus Chan (left) expresses her gratitude to the HKSAR government and the pharmaceutical company for offering free treatment to her son.

About "Love Never Ends":

Publication date: July 2018

Author: Families of SMA Charitable Trust

Price: HK$100

* The new book will be launched for sale at the Hong Kong Book Fair, 18 July, and available at bookstores afterward.

New book's introduction：

SMA (Spinal Muscular Atrophy) patient Josy Chow Pui Shan, a Hong Kong University student spent 4 months preparing a 100-page proposal with only two fingers to persuade the government to introduce a new drug to treat SMA. Last October, Hong Kong Chief Executive Mrs. Carrie Lam promptly responded and the story became the talk of the town. The good news is that the new drug will soon be registered in Hong Kong, bringing new hope to the SMA patients.

This astonishing miracle is attributed to a group of patients and families from Families of Spinal Muscular Atrophy Charitable Trust (FSMA) who never give up. This year, FSMA is celebrating its 20th Anniversary and launching a new book "Love Never Ends" with 12 inspiring stories for this special occasion.

The new book presents the stories of our heroine Chow Pui Shan, Paralympic boccia player Ho Yuen Kei, disabled artist Li Wai Pa who paints with his mouth, as well as the experiences of other brave patients. They are full of love and passion, and they are brave enough to live life to the fullest, despite their health has been undermined by SMA. FSMA indeed has a very special ultimate goal – to close down one day – so there will be no more SMA and the patients will stand up again and embrace their dreams!

FSMA is grateful to the support from different sectors of the community for the support. We are honoured to have Mrs Carrie Lam writing the foreword for us, and Mr Andy Lau’s calligraphy of the book title. We hope that you will enjoy the 12 true stories in "Love Never Ends" and we want you to always remember - when there is love, there is a loving home, life is always full of hope.