Podcast

Healthcare Today with Manvir Victor – Ep 11: Rare disease patients fundraise to help their own

Lee Yee Seng, president of the Malaysia Lysosomal Diseases Association speaks on raising awareness through events like 'Ride With Hope'

Updated 3 years ago · Published on 08 Feb 2023 9:00AM

Healthcare Today with Manvir Victor – Ep 11: Rare disease patients fundraise to help their own
Host Manvir Victor speaks with Lee Yee Seng, president of the Malaysia Lysosomal Diseases Association. – Azim Rahman/The Vibes pic, February 8, 2023

LEE Yee Seng thought being a dad would mean the usual scenario for him – planning his daughters school with university eventually in the future. All that changed when his daughters, aged six and two, were both diagnosed with POMPE disease.

As he began to learn more about the disease and how he could help care and make his daughters lives more fulfilled, he set up an organisation, which he now leads as its president.

Today, the Malaysia Lysosomal Diseases Association raises funds for many patients in need and highlights their plight to the Ministry of Health, and has successfully obtained about RM4 million in funding for patient medication.

– Azim Rahman/The Vibes pic
– Azim Rahman/The Vibes pic

A novel way to reach the masses and highlight the need of those afflicted is by organising cycling events. One such event will be taking place this June 4th in Kluang and will be a 100km ride to raise funds. For those keen to find out more, they can follow 'Ride With Hope' and Malaysian Lysosomal Diseases on Facebook. 

Healthcare Today is also looking for participants who would like to donate and participate with host Manvir Victor in this 100km ride on June 4. Let us get together and do what we can to help our fellow citizens.

More than just that, we can also share this podcast and let more people know about the many ways we can reach a larger audience to help these kids and adults who need some assistance. 

– Azim Rahman/The Vibes pic
– Azim Rahman/The Vibes pic

In this episode, we discuss the disease and also highlight some steps you can take to find out and seek help should you think your loved one suffers a similar ailment. Direct message on Twitter @manvirvictor should you have any questions. – The Vibes, February 8, 2023

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