Good Evening Ladies and Gentlemen,

This evening marks the first fund raising dinner of the Muscular Dystrophy Association (Singapore) and also its 2^nd Anniversary. I am honored to be here and to share this special occasion with all of you.

Not many people know about Muscular Dystrophy, a term that applies to a group of related muscle diseases which are progressively incapacitating - and sometimes life-threatening - because the muscle fibers degenerate. These diseases often manifest in childhood, although some begin in adulthood. The majority of cases are caused by a large variety of inherited gene abnormalities.

Research data drawn from international studies suggest that on average, 1 in 3000 persons may have some form of inherited nerve and muscle disease. Based on the 4 million people we have here in Singapore, we can expect to have up to 1,300 persons with an inherited nerve and muscular disease. Of these, close to 500 would be patients with the major forms of muscular dystrophy.

Patients with Muscular Dystrophy have special and significant needs, many of which are only just starting to be met, even in the most developed of countries. Besides the medical problems that they suffer from, these patients and their families face a multitude of problems in daily living, in terms of mobility, education, work, recreation and social and psychological issues. For these reasons, Muscular Dystrophy Associations worldwide have taken root in the USA, Europe, Australia and Japan to meet these very real needs.

I am glad and heartened that here in Singapore, we too have a group of dedicated and energetic patients, supporters and healthcare professionals who have banded together to form the Muscular Dystrophy Association, or MDA, which is a non-profit organization solely manned by volunteers. The MDA here in Singapore shares common aims with its other sister Muscular Dystrophy Associations, which are:

• To help patients with Muscular Dystrophy
• To educate patients, families and public on the disease, and
• To support scientific research in order to find a cure.

In the short time since its formation, I understand that the MDA has worked ceaselessly to fulfill these aims. Firstly, it has formed for its members a support group and has organized social outings, educational activities and sports programmes. All of these are necessary to enable them to cope with problems and continue to be part of society. Secondly, the MDA has been actively equipping its members and caregivers with knowledge and skills through talks and workshops which also serve to improve the general public’s understanding and acceptance of disabled people with Muscular Dystrophy. To this end, the Association’s quarterly newsletter, M-POWER is distributed not just to members, but also to government offices, voluntary welfare organizations, hospitals, clinics, schools and community centers. Lastly, the MDA is doing its part to support local research by partnering with the medical profession in a project to set up a registry of patients with Muscular Dystrophy. This registry would facilitate research into Muscular Dystrophy and the development of services for patients.

In the past few years, the Government has been gradually increasing the medical research capability in Singapore and the results can be seen in the various areas of research currently being undertaken where once such endeavors would have been wishful thinking. In the area of Muscular Dystrophy, medical research is being carried out locally in institutions like the National Neuroscience Institute, the National University of Singapore and the Kandang Kerbau Women’s and Children’s Hospital.

At the National Neuroscience Institute, or NNI, researchers are setting up a molecular genetics laboratory that will conduct research on genetic neuromuscular diseases, including several Muscular Dystrophies, so as to identify mutations and the genes involved. The NNI will also move into stem cell research for treatment of muscular dystrophy. At the National University of Singapore, the Pediatric Genetics Laboratory, which provides gene diagnostic service for Duchenne Muscular Dystrophy and spinal muscular atrophy, also conducts research into the use of gene therapy for Duchenne Muscular Dystrophy. Last but not least, the Genetics Laboratory at Kandang Kerbau Hospital provides gene diagnostic service for myotonic dystrophy and spinal muscular atrophy. The knowledge gap regarding Muscular Dystrophy and its related diseases is therefore being narrowed constantly because of all these services and research efforts.

In closing, I would like to commend all of you who have contributed tonight to this fund raising dinner for your sense of giving and caring. As you may now realize, meeting the needs of people with Muscular Dystrophy must involve not only the patient’s family, but also society as well. Your contributions will touch more people than you can imagine.

We need our society to realize that the disabled and those with incurable diseases can and should aim to live useful and rewarding lives. Volunteer organizations such as the Muscular Dystrophy Association are, therefore, indications that the society has matured and is willing to help these persons achieve those aims.

It just leaves me to now wish you all an enjoyable evening ahead. Thank you.