Hong Kong Neuro-muscular Disease Association
A self-help non-profit making charitable organization for people suffered from Neuro-muscular disease and their carers
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
- 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.
- 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.
- There is no prevention and medication to cure the disease, the cause is unknown until now.
- The number of patients is too small to arouse social concern and ask for proper services in treatment, rehabilitation and social welfare.
- 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.
- 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.
To facilitate patients and their carers to pursue a high quality of life, and that we should create and develop a better social environment.
- To provide updated information of the diseases, related treatment, social resources and activities.
- To facilitate an atmosphere of mutual support among patients, carers and volunteers.
- To assist related funding and professional bodies for providing rehabilitation and psycho-social programmes, as well as rehabilitation equipment and resource.
- To urge the medical institutes and professionals for the development of medical treatment.
- 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.
- To co-ordinate different disease groups’ efforts for the benefits of all members.
- To establish and enhance the networks with related institutes and professionals for case referral, information sharing and joint venture.
- To liaise with funding bodies for stable donation and sponsorship.
- To communicate with other patient self-help organizations on medical, health and social welfare policies and services.
- To publish newsletter regularly for enhancing members’connection and providing updated information.
- To provide local and overseas information about the disease, treatments and social resources.
- To invite medical, health and social professionals as the professional advisors of the Association.
- To establish regional mutual-help groups – Hong Kong Island, Kowloon East, Kowloon Central, New Territories East and New Territories West regions.
- To organize community educational programmes and seminars.
- To make use of mass media to arouse public concern on the needs of patients and carers.
- To arrange friendly visits to hospitals, specialty out-patient clinics, allied health departments and special schools .
- Medication and medical treatment
- Integrated social rehabilitation programme, day care centre and residential care, especially for adult patients
- Accessibility and public transportation
Direct Service Provision
- Rehabilitation and psycho-social programme
- Talk, workshop and seminar
- Regular gathering
- Social and recreational activities
- Educational package and materials
- Social concern group on related policy and service
- Volunteer service and concern visit
- District-based small mutual support group
Address : G/F., Wang Lai House, Wang Tau Hom Estate, Kowloon, Hong Kong SAR, PRC.
Tel. : (852) 2338 4123
Fax : (852) 2338 2410
E-mail : email@example.com
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.
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.
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:
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.
Being a member of The Community Chest of Hong Kong and launched a series of school visits and community talks.
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.
We launched a series of activities to urge for better support to the patients living in the community.
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
- “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.
- 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”.
- In 2013, our Association organized the Muscular Dystrophy Mutual Help Group to widen the network for self-help.
- In 2014, our Association had succeeded the Social Welfare Department to establish “Home Care Service for Persons with Severe Disabilities”.
- 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.
- 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.
- 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.
- In 2013, our Association organized the Spinal Muscular Atrophy Mutual Help Group to widen the network for self-help.
- 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.
- 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.
- In 2017-2018, our Association had done site visit on over 80 sites to find the suitable place for establishing our own centre.
- 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.
- 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.
- 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.
- 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.
- 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.
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
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.