Prof Dr Thong Meow Keong, Malaysia's first board-certified clinical geneticist (1994), has transformed rare disease care and genetic healthcare in the country.
Globally, he advises WHO on genomic policies and contributes to the Global Genomic Medicine Consortium to improve rare disease risk assessment.
Prof Dr Thong is one of the winners of the Star Golden Hearts Award 2024, an annual award by The Star that recognises selfless Malaysian unsung heroes who make a positive impact on society and promote unity among the people.
For more, visit https://www.sgha.com.my/
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Globally, he advises WHO on genomic policies and contributes to the Global Genomic Medicine Consortium to improve rare disease risk assessment.
Prof Dr Thong is one of the winners of the Star Golden Hearts Award 2024, an annual award by The Star that recognises selfless Malaysian unsung heroes who make a positive impact on society and promote unity among the people.
For more, visit https://www.sgha.com.my/
WATCH MORE: https://thestartv.com/c/news
SUBSCRIBE: https://cutt.ly/TheStar
LIKE: https://fb.com/TheStarOnline
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NewsTranscript
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