Hong Kong Neuro-Muscular Disease Association

A self-help non-profit making charitable organization for people suffered from Neuro-muscular disease and their carers

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Introduction

Hong Kong Neuro-Muscular Disease Association is a self-help non-profit making charitable organization for people suffered from Neuro-muscular disease and their carers founded in 1998 under the society ordinance and Inland Revenue Ordinance. It was then incorporated as a limited company in 2012. The Association aims to improve the quality of life and assemble efforts in creating a favorable social environment for people with neuro-muscular disease and their families. It provides mutual support groups, psycho-educational programmes, volunteer visits, social and recreational activities, policy advocacy, information giving and public education activities.

Difficulties of patients and carers

1. There are many types of Neuro-muscular Diseases, such as Motor Neuron Disease (MND), Spinal Muscular Atrophy (SMA), Spinocerebellar Ataxia (SCA), Multiple Sclerosis (MS) and Muscular Dystrophy (MD). Some of them are terminal diseases, for example, the ALS type, SMA type 1, and DMD type.
2. The muscles of the patients will be wasted and degenerated progressively, it affects their mobility, communication, self-care, work and leisure, and the worst result is that they feel difficult in swallowing and breathing.
3. There is no prevention and medication to cure the disease, the cause is unknown until now.
4. The number of patients is too small to arouse social concern and ask for proper services in treatment, rehabilitation and social welfare.
5. In general, the cognitive and sensory abilities of the patients are not affected. They fully realize the progress and the situation of the disease and how it damages their health.
6. The carers are extremely stressful to take care of the patients who are being deteriorated in health without any medication and the worst situation is that some patients will pass away several years later.

Mission

To facilitate patients and their carers to pursue a high quality of life, and that we should create and develop a better social environment.

Ultimate Goals

1. To provide updated information of the diseases, related treatment, social resources and activities.
2. To facilitate an atmosphere of mutual support among patients, carers and volunteers.
3. To assist related funding and professional bodies for providing rehabilitation and psycho-social programmes, as well as rehabilitation equipment and resource.
4. To urge the medical institutes and professionals for the development of medical treatment.
5. To provide collective power of patients, carers and volunteers for arousing public awareness of the diseases, advocating a fair allocation of social resource and fundraising.
6. To co-ordinate different disease groups’ efforts for the benefits of all members.

Service Contents

Networking

1. To establish and enhance the networks with related institutes and professionals for case referral, information sharing and joint venture.
2. To liaise with funding bodies for stable donation and sponsorship.
3. To communicate with other patient self-help organizations on medical, health and social welfare policies and services.
4. To publish newsletter regularly for enhancing members’connection and providing updated information.
5. To provide local and overseas information about the disease, treatments and social resources.
6. To invite medical, health and social professionals as the professional advisors of the Association.
7. To establish regional mutual-help groups – Hong Kong Island, Kowloon East, Kowloon Central, New Territories East and New Territories West regions.

Service Promotion

1. To organize community educational programmes and seminars.
2. To make use of mass media to arouse public concern on the needs of patients and carers.
3. To arrange friendly visits to hospitals, specialty out-patient clinics, allied health departments and special schools .

Social Policy

1. Medication and medical treatment
2. Integrated social rehabilitation programme, day care centre and residential care, especially for adult patients
3. Accessibility and public transportation

Direct Service Provision

1. Rehabilitation and psycho-social programme
2. Talk, workshop and seminar
3. Regular gathering
4. Social and recreational activities
5. Educational package and materials
6. Social concern group on related policy and service
7. Volunteer service and concern visit
8. District-based small mutual support group

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Contact Us

Address : No.1, G/F., Fu Nga House, Tai Wo Hau Estate, Tsuen Wan, N.T., Hong Kong SAR, PRC.

Tel. : (852) 2338 4123

Fax : (852) 2338 2410

E-mail : info@hknmda.org.hk

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Donation

1.Cash – Direct pay-in to Hong Kong Bank Account 078-353133-838.
2.Cross Cheque – Payable to “Hong Kong Neuro-Muscular Disease Association”.
3.Please send the bank pay-in-slip / cheque together with your contact details to us.

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History

Footprint, tear and laughter

Hong Kong Neuro-Muscular Disease Association (HKNMDA) was founded in 1998 by a group of patients and their families. When we look back the rough road we opened up, we saw our footprints messed with the marks of reeling and falling. We are proud of it because we can stand up again every time and go ahead with laughter and hope.

The Infant Stage

(1997 – 2001)

With the extensive help from Ms. Ivy Ho and the Community Rehabilitation Network (CRN), a group of sufferers of neuro-muscular disease and their family members, including Mr. Kwong Wah and Mrs. Rebecca Wan, established a mutual-help group in 1997. Aiming to ease the sufferings caused by the terrible diseases and improve our living quality through join efforts, HKNMDA was founded in 20 September 1998 and registered as a legal entity in November.

At the early stage, the Association concentrated on organizing home visits, medical seminars and recreational activities for the sufferers of MND, SMA and MD. The CRN played an important role by providing us with most of the resources, including places for working and gathering, as well as equipment and fund. It also acted as a consultant by giving us advice and directions for the Association’s development.

The Association set up its management system and took over daily administration from CRN quickly as we gained the experience and confidence. Our first job was to establish a support network among our members and group them according to the kinds of diseases. We also invited a group of professionals to be our consultants and formed a volunteer team to assist our activities.

Dr. Liu Endowment Fund was our start-up fund and it helped us to become financially independent from CRN. Half of the fund was distributed directly to individual MND families for purchasing medical equipment and consumables. Another half was used for the operating costs of the Association. We formed a task force to manage the spending of the fund as a special project. Our practice then developed a system for us to deal with other similar projects. The injection of the fund also facilitated our organizational administration in terms of better planning and financial control. We began to set our annual plans and formed an accounting team to handle the more complicated accounting issues. Dr. Liu Endowment Fund remains one of the most stable sources of funds till now.

At this Infant Stage, the number of members was small but everybody was highly motivated. On the other hand, our administration system was simple but our relationship was close. We tried to establish support and communication networks to mobilize members and established different functional teams, such as publication, accounting, visitation and recreational activities.

The Stage of Growth and Exploration

(2001 – 2003)

The Association has become an independent organization after CRN drew back from the front line and took up the role as our consultant and resource provider. As we got more members, resources, experience and had a better understanding of our members’ needs, we employed our first staff to prepare for some new services. We managed to apply the sponsorships from some social funds. With their support we launched some important programmes.

During this period, all members of the executive committee were patients and their families. They made the policies and implemented them with the help of our staff. Now we have employed 2 registered social workers. Their professional knowledge and skills can help us to improve our efficiency.

The injection of manpower has enabled us to offer better services to our members. We work more efficiently and we have closer contacts and better communications with our members. Moreover, we help our members to have a better awareness of their rights and also try to approach the government to lobby for some policy changes in order to establish a more friendly society to neuro-muscular sufferers.

Some of our important programmes during this period are listed below:

1. “Self-help and Mutual-help” Programme

This is a programme sponsored by the Social Welfare Department from November 2001 to November 2003. The aim of the programme is to:

• distribute up-to-date medical information and community resources materials to patients and their families,
• promote communication and care among members by establishing support networks, and
• promote positive thinking and encourage members to help themselves and others.

We achieve the aim and objectives by publishing useful materials via different media, strengthening District-based Groups and Disease Groups and organizing promotional and educational programmes.

In the past two years, all the groups showed encouraging growth. Many members turned themselves from being-helped to the one offering help. Some of them showed amazing changes in personality and self-confidence. There are two new members in the present executive committee. Both of them are new members from District Groups. In general, we can see more frequent communications and organized visits, as well as improved quality of activities and increase in members’ sense of belonging. Members are more willing to ask for help and also contribute their efforts.

2. Oxfam Hong Kong Programme

Oxfam Hong Kong Programme has been sponsoring us for three consecutive years. Present sponsorship will be ended in March 2004. The aim of the programme is to empower members through policy advocacy works and activities, including concern group, information gathering, policy lobbying and public awareness enhancement. The programme also helps us to strengthen our organizational structure by sponsoring training courses for group leaders and exchange meetings with other established organizations.

3. Social and Psychological Consultancy for Families with Children of Muscular Dystrophy

This is a programme sponsored by ACCA Hong Kong in 2002. The aim of the programme is to:

• set up support networks among the suffering families,
• encourage emotional support and recognition, and
• distribute information of rehabilitation and community resources.

We achieve the aim through a series of activities, including the establishment of a parents’ group and publication of a carers’ guide. There are also seminars and recreational activities tailor-made for the suffering families.

4. Fundraising campaign

We launched our first fundraising campaign in 2002. Our second attempt took place in June 2003 and there will be our third attempt in this November. We have spent a lot of efforts in raising money and, in fact, fundraising will be an important part of our yearly task.

As a whole

The Association is no longer a simple one and we need to rethink our direction from the very basic point of view, such as: will HKNMDA be transformed into a service provider?

At the moment, we think “small means good”. The Association is a mutual-help organization providing its members with limited quantity of services. Actualizing the spirit of “mutual-help” is our primary job.

District-based Groups complemented with Disease Groups are our basic means for actualizing the spirit of “mutual-help”. They also form the foundation of the Association.

Establish a fundraising team to strive for the long-term financial stability.

For the long-term development, the Association will become the core and aggregate of many patient groups of different types of neuro-muscular diseases.

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Recent Development

2004

People with tetraplegia face substantial physical and financial hardships. After years of actions and lobbying, we made a great leap in improving the social support for our members this year.

“The department (Social Welfare Department) has recently revised the application criteria for the Care and Attention Allowance under the CSSA Scheme to facilitate these patients to hire personal carers. Up to a maximum of $4,296 per month can be reimbursed according to actual expenses.

“Starting from November 1, 2004, the Enhanced Care and Attention Allowance has been introduced for eligible tetraplegic patients to include a monthly special addition of $1,115 on top of the monthly expenditure required for hiring a carer,” the spokesman said.

The Government is also seeking community resources to support tetraplegics’ needs. The Yan Chai Hospital Board has thus set up the Yan Chai Tetraplegic Fund in September this year with the aim of providing assistance to relieve the financial difficulties of these patients.

The SK Yee Medical Fund has allocated a total of $1 million to “The Hong Kong Neuro-muscular Disease Association” to subsidise purchases of medical appliances and consumable items. “

The Integrated Home Care Services have extended their service to cover severely disabled persons in August this year in order to provide holistic care and support services to these persons according to their individual needs, including meals delivery, home-making, escort services, personal and nursing care.

Extract from the press release of SWD in November 1, 2004:
http://www.swd.gov.hk/en/index/site_pubpress/page_press/sub_fullpress/topic_15/

2005

Interferon had a beneficial impact in relapsing multiple sclerosis patients by reducing the accumulation of permanent physical disability, exacerbation frequency, and disease activity. The medicine is expensive and not included in the Formulary as Hospital Authority standard drugs.

We launched a series of events to urge the Hospital Authority to include Interferon in its drug formulary. The campaign failed but The Samaritan Fund started to provide financial assistance in the year.

Our SCA Group and MND Group sent their delegations to Taiwan to visit local patients’ organizations.

2006

Being a member of The Community Chest of Hong Kong and launched a series of school visits and community talks.

2007

Child and Parents Group was formed.

We launched a series of promotional activities to celebrate our 10th anniversary, including the publishing of a book called《飛不起，讓我走下去》and photo exhibitions to show the community the power of life.

2010-11

We launched a series of activities to urge for better support to the patients living in the community.

2012

The Hospital Authority added 3 types of medication to the list of special drugs that are dispensed almost free of charge to public hospital patients. The newly-included medicine, interferon, is one of the effective medicines to treat multiple sclerosis, which costs patients HK$7,000 to HK$8,000 a month.

Incorporated as a limited company

1. “The Handbook for Motor Neuron Disease Patients and their Carers” was published in 2012, aiming at improving the quality of care on the MND patients living in community.
2. In 2013, our Association had succeeded the Community Care Fund to roll out “Provision of Special Subsidy to Persons with Severe Physical Disabilities for Renting Respiratory Support Medical Equipment” and “Special Subsidy to Persons with Severe Physical Disabilities for Purchasing Medical Consumables Related to Respiratory Support Medical Equipment”.
3. In 2013, our Association organized the Muscular Dystrophy Mutual Help Group to widen the network for self-help.
4. In 2014, our Association had succeeded the Social Welfare Department to establish “Home Care Service for Persons with Severe Disabilities”.
5. In 2015, our Association had succeeded the Social Welfare Department to establish “Integrated Support Service for Persons with Severe Physical Disabilities” and the normalization of Community Care Fund’s “Special Subsidy to Persons with Severe Physical Disabilities for Renting Respiratory Support Medical Equipment” and “Special Subsidy to Persons with Severe Physical Disabilities for Purchasing Medical Consumables Related to Respiratory Support Medical Equipment”. Also, the financial test of these two services had been relaxed, by which some of the family who are not able to gain the full grant can have 1/3 subvention in renting respiratory support medical equipment or 1/2 subvention in purchasing medical consumables related to respiratory supporting medical equipment.
6. In 2014-2015, our Ice Bucket Support Scheme had granted $520,216 for 13 families with neuro-muscular disease patients to subside their expenditure for helping them living in the community.
7. In 2015-2016, our Ice Bucket Support Scheme had granted $801,204 for 20 families with neuro-muscular disease patients to subside their expenditure for helping them living in the community.
8. In 2013, our Association organized the Spinal Muscular Atrophy Mutual Help Group to widen the network for self-help.
9. In 2016-2017, our Ice Bucket Support Scheme had granted $1,511,275 for 30 families with neuro-muscular disease patients to subside their expenditure for helping them living in the community.
10. In 2017-2018, our Ice Bucket Support Scheme had granted $1,522,650.6 for 38 families with neuro-muscular disease patients to subside their expenditure for helping them living in the community.
11. In 2017-2018, our Association had done site visit on over 80 sites to find the suitable place for establishing our own centre.
12. In 2018, Ms Chow Pui Shan, our SMA member, had succeeded the government to allow SPINRAZA, the medicine for SMA treatment, being used in Hong Kong. This help some of the SMA patients to continue living in the community.
13. In 2015-2016, our Ice Bucket Support Scheme had granted $1,254,661 for 27 families with neuro-muscular disease patients to subside their expenditure for helping them living in the community.
14. In 2019, our Association was given the site to build our own centre. The location is at No.1, G/F, Fu Nga House, Tai Wo Hau Estate. This is our mild stone for our development.
15. Following the preparation of our new site, we had organized the Personnel System Committee to evaluate our existing manpower management in 2019. It aims to build up foundation for the future development in our new site.
16. In order to increase the member’s involvement in establishment of the new site, our Association had organized the Site Preparation Team. The Team is working for the fitment project and the purchase of equipment of the new site. The setup of the Team had consolidated the bonding among our members.

Cash Grant

During the years, we raised fund to support our members to buy expensive life sustaining equipment, medical consumables and personal care services. Millions of dollars were passed to our members reduce their hardship. Many many thanks to the donors:

• Dr. Liu Endowment Fund
• IP Chi Shing Charitable Foundation Limited
• Li Ka Shing Foundation (Love ideas Love Hong Kong)
• Mr. Robert Ng
• S.K. Yee Medical Foundation
• The D.H. Chen Foundation

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Thank You

Thank you very much to all the people who have contributed much to the growth of the Association. In addition to the people and organizations mentioned above, I would like to take this opportunity to thank our consultants, donors, volunteers, members and peers. It is impossible for us to maintain the Association without your continuous support. We are confident of overcoming all the difficulties ahead but our future depends on the joint efforts of all of you.

關於我們

香港肌健協會
一個為神經-肌肉疾病患者及家屬服務的病人自助組織

簡介

香港肌健協會是一個為神經-肌肉疾病患者及家屬服務的病人自助組織，於1998年依據《社團條例》及《稅務條例》成立，其後於2012年註冊成為有限公司。本會旨在提升患者生活質素，並合力營造對神經肌肉病患者及其家庭友善的社會環境。我們提供互助小組、心靈教育課程、義工探訪、社交及康樂活動、政策倡議、資訊提供及公眾教育活動。

患者及照顧者面對的困難

1. 神經肌肉病種類繁多，例如運動神經元病（MND）、脊髓性肌肉萎縮症（SMA）、脊髓小腦萎縮症（SCA）、多發性硬化症（MS）及肌肉營養不良症（MD）。其中部分屬於絕症，例如ALS型、SMA 1型及DMD型。
2. 患者的肌肉會逐漸萎縮及退化，影響行動能力、溝通、自理、工作及休閒，最嚴重時會出現吞嚥及呼吸困難。
3. 目前沒有預防方法及根治藥物，病因至今仍未完全清楚。
4. 患者人數相對稀少，難以引起社會廣泛關注，亦難以爭取適當的治療、復康及社會福利服務。
5. 大部分患者的認知及感覺能力不受影響，他們完全明白疾病的進展及對健康的破壞。
6. 照顧者面對患者健康持續惡化、沒有藥物可治癒、最終部分患者會在數年後離世的情況，承受極大心理壓力。

宗旨

致力提高神經-肌肉疾病患者的生活質素，團結患者及家屬的力量，創造對患者有利的社會環境。

終極目標

1. 提供疾病、相關治療、社會資源及活動的最新資訊。
2. 促進患者、照顧者及義工之間的互助氛圍。
3. 協助相關資助及專業機構提供復康及心理社會課程，以及復康器材及資源。
4. 敦促醫療機構及專業人士發展醫療治療。
5. 凝聚患者、照顧者及義工的力量，提高公眾對疾病的認識，倡議公平分配社會資源及籌款。
6. 協調不同疾病小組的努力，惠及全體會員。

服務內容

網絡建立

1. 與相關機構及專業人士建立及加強聯繫，促進個案轉介、資訊分享及合作項目。
2. 與資助機構聯繫，爭取穩定捐款及贊助。
3. 與其他患者自助組織就醫療、健康及社會福利政策與服務進行溝通。
4. 定期出版通訊，加強會員聯繫並提供最新資訊。
5. 提供本地及海外有關疾病、治療及社會資源的資訊。
6. 邀請醫療、健康及社會專業人士擔任本會專業顧問。
7. 設立地區互助小組 — 香港島、九龍東、九龍中、新界東及新界西地區。

服務推廣

1. 舉辦社區教育計劃及講座。
2. 利用大眾傳媒喚起公眾對患者及照顧者需要的關注。
3. 安排友善探訪醫院、專科門診、綜合治療部門及特殊學校。

社會政策

1. 藥物及醫療治療
2. 綜合社會復康計劃、日間護理中心及院舍照顧（特別針對成年患者）
3. 無障礙設施及公共交通

直接服務提供

1. 復康及心理社會課程
2. 講座、工作坊及研討會
3. 定期聚會
4. 社交及康樂活動
5. 教育套裝及材料
6. 相關政策及服務關注小組
7. 義工服務及關懷探訪
8. 地區小型互助小組

聯絡我們

地址：香港新界荃灣大窩口邨富雅樓地下1號
電話：(852) 2338 4123
傳真：(852) 2338 2410
電郵：info@hknmda.org.hk

捐款方式

1. 現金 — 直接存入匯豐銀行帳戶 078-353133-838
2. 劃線支票 — 抬頭請寫「香港肌健協會」
3. 請將銀行入數單據 / 支票連同您的聯絡資料寄給我們。

歷史

足跡、淚水與歡笑
香港肌健協會（HKNMDA）於1998年由一群患者及家屬創立。回顧我們開拓的艱辛道路，足跡中夾雜著跌倒與掙扎的痕跡。但我們引以為傲，因為每一次跌倒後，我們都能重新站起來，帶著歡笑與希望繼續前行。

初生階段（1997–2001）

在何綺雲女士及社區復康網絡（CRN）的全力協助下，一群神經肌肉病患者及家屬（包括江華先生及溫麗珍女士）於1997年組成互助小組，並於1998年9月20日正式成立香港肌健協會，同年11月註冊成為合法團體。
早期本會集中舉辦家居探訪、醫學講座及康樂活動，服務對象主要為MND、SMA及MD患者。CRN在此階段提供大部分資源，包括活動場地、設備及資金，並擔任顧問角色給予發展方向。
隨著經驗及信心增加，本會迅速建立管理制度，並逐步接手日常行政工作。我們首先建立會員支援網絡，按疾病種類分組，並邀請專業人士擔任顧問，組成義工隊協助活動。
廖醫生基金為我們的起步資金，幫助本會實現財政獨立於CRN。其中一半直接資助個別MND家庭購買醫療器材及耗材，另一半用於協會營運。此基金至今仍是穩定資金來源之一。

成長與探索階段（2001–2003）

CRN退居顧問及資源提供角色後，本會成為獨立組織。隨著會員增加、資源累積及對會員需求的更深入了解，我們聘請首位職員，並成功申請多項社會基金贊助，推出重要計劃。
此階段行政委員會全部由患者及家屬組成，制定政策並與職員共同執行。其後我們聘請兩名註冊社工，其專業知識提升服務效率。
重要計劃包括：

• 「自助與互助」計劃（社署資助，2001–2003）
• 樂施會香港計劃（連續三年資助）
• 肌肉營養不良兒童家庭心理社會諮詢計劃（ACCA香港資助，2002）
• 首次籌款活動（2002年起）

近年發展（重點摘要）

• 2004：成功爭取社署修訂「傷殘津貼」申請準則，引入「加強照顧津貼」，並獲多項基金支持。
• 2005：推動干擾素納入醫管局藥物名冊（雖未成功，但撒瑪利亞基金開始提供資助）。
• 2007：成立兒童及家長小組；出版《飛不起，讓我走下去》及舉辦相展慶祝10週年。
• 2012：註冊成為有限公司；出版《運動神經元病患者及照顧者手冊》。
• 2013–2018：成功爭取多項社區照顧基金及社署計劃，包括呼吸支援設備租借及耗材資助；推行「冰桶挑戰支援計劃」，累計資助數百萬港元惠及數十個家庭。
• 2018：SMA會員周佩珊成功爭取SPINRAZA在港使用。
• 2019：獲分配大窩口邨富雅樓地下1號作為永久會址；成立人事制度委員會及新址籌備小組。

現金資助

多年來，我們籌集資金協助會員購買昂貴維生設備、醫療耗材及個人照顧服務，累計撥款數百萬港元，減輕患者及家庭負擔。衷心感謝以下捐助者：

• Dr. Liu Endowment Fund
• 葉志成慈善基金有限公司
• 李嘉誠基金會（愛‧思‧愛香港）
• Mr. Robert Ng
• S.K. Yee Medical Foundation
• 陳廷驊基金會
  

以及所有捐款人、顧問、義工、會員及同路人。沒有你們持續支持，本會無法走到今天。

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