00:00Hello, I'm Dr Thong Miao Keong. I'm a consultant clinical geneticist at ASU Malaya Medical Centre.
00:07I am the winner of the 2024 Golden Hearts Award.
00:20Over three decades ago, the lack of support for parents and children with rare genetic conditions
00:25inspired a young doctor to make a difference.
00:27Many years ago when we were training as doctors, as medical students, we didn't have much training
00:34in genetics or children with rare conditions. So when we first graduated and worked in the
00:41district and rural hospital where I did, I came across many of these children who are disabled.
00:48Many of them had unknown syndromes and they didn't get the support of what they need.
00:55So one of the things that I always believed was we should not leave anyone behind. So when I got
01:02the chance to do my specialist training, I did not hesitate. I said I want to do paediatrics.
01:09Becoming Malaysia's first board-certified clinical geneticist in 1994, Dr Thong has since
01:14revolutionised rare disease, RD care in the country, where nearly 5% of the population is affected.
01:21His journey included three years of training at the Women's and Children's Hospital in Adelaide
01:25and a year at Melbourne's Royal Children's Hospital in Australia.
01:28I got many offers when I finished training to stay on in Australia, but I came back because
01:33I felt that many of our children and patients need help here.
01:38In 1995, Dr Thong launched Malaysia's first genetic clinic, introduced enzyme replacement
01:43and gene therapies, and co-founded the Malaysian Rare Disorders Society, MRDS,
01:49with Datuk Hatija Ayob in 2004. His advocacy helped establish clinical genetics as a
01:55recognised subspecialty in Malaysia and earned him awards like the Fulbright Scholar Award in 2004
02:01and the American Society of Human Genetics Advocacy Award in 2022.
02:07This is the award that I received from the American Society of Human Genetics.
02:12This is an advocacy award given out in 2022 in the USA, and I was in Los Angeles at the time.
02:23So this is an award in recognition of the services that are provided for patients
02:28and to champion genetic services in the Asia-Pacific region.
02:36So I believe that I'm the first non-American to be given this award.
02:42So this is a very proud moment.
02:45He recalls a time when genetic services, counselling and lab tests were non-existent,
02:50leaving patients and families in the dark about their conditions.
02:54The most difficult challenges that we often face is the lack of awareness of children who has
03:02rare diseases and genetic diseases. This low level of awareness brings about stigmatisation,
03:10discrimination, and this leads to many of these children not getting the help that they need.
03:17Many of these parents are ostracised.
03:20Thanks to his advocacy, the Health Ministry established its own genetic clinic in the year 2000.
03:25Through MRDS, Dr Tong has raised over RM50 million to support rare disease
03:29treatments for disadvantaged families.
03:32We train a very core group of parents to be advocates for their children,
03:37to speak up for their rights, to fight against discrimination.
03:42My work is just to raise the awareness, raise the education of parents,
03:48and empowering parents to come up and speak.
03:51He also pioneered newborn screening at University Malaya Medical Centre,
03:55UMMC, in 2015, enabling early detection of rare genetic diseases.
04:01As a result of his efforts, more than 20,000 patients now access genetic services
04:06and over 12,000 newborns have been screened.
04:10With a simple heel prick, genetic conditions can be identified within a baby's first week,
04:15enabling timely treatment.
04:17Dr Tong envisions making this screening a standard service in all public hospitals across Malaysia.
04:22On a global scale, Dr Tong advises the World Health Organisation, WHO, on genomic policies,
04:29and serves on the Global Genomic Medicine Consortium to enhance tools for assessing rare
04:33disease risks.
04:35As an Honorary Professor at UMMC and Dean at Utah, he remains committed to raising awareness
04:42for RD patients and is collaborating with WHO to create a global RD patient registry.
04:48Happy anniversary to the Star Golden Hearts Award.
05:03you
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