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Published: Tuesday September 2, 2014 MYT 12:00:00 AM
Updated: Tuesday September 2, 2014 MYT 7:14:20 AM

Ice bucket challenge raises RM10,360

PETALING JAYA: Some 100 people took part in a mass ice bucket challenge but this time, it is not for Amyotrophic Lateral Sclerosis (ALS).

The spotlight is on a lesser known disease called Lysosomal Storage Disease (LSD) and the charity event at the roof top of a shopping mall in Subang Jaya near here raised an impressive RM10,360.

Malaysia Lysosomal Diseases Association (MLDA) president Lee Yee Seng decided to do the charity event with a twist due to the popularity of ALS ice bucket challenge.

“If one person takes up the challenge, it takes 12 levels to reach 200,000 people. But if 100 people take up the challenge, it will take seven levels to reach 200,000 people.

“If everyone can raise RM100, we can reach RM20mil in two weeks,” he told a press conference after taking part in the challenge yesterday.

The money is meant for treatment of 20 patients – two diagnosed with glycogen storage type II or Pompe while the rest are diagnosed with various types of mucopolysaccharidoses (MPS).

The treatment for each of the children cost between RM276,000 and RM1.5mil yearly.

Without treatment, LSD patients will lose their body function slowly and often die at a young age.

The symptoms of LSD vary, depen­ding on the particular disorder and other variables such as the age of onset and can be mild to severe.

They can include developmental delay, movement disorders, seizures, dementia, deafness and/or blindness. Some people with LSD have enlarged livers and enlarged spleens, pulmonary and cardiac problems, and bones that grow abnormally.

Lee, who has two daughters with LSD, said 44 patients had been registered with MLDA but the actual number could be higher.

For more information on LSD and how to donate, visit www.mymlda.com

Tags / Keywords: lysosomal storage disease, LSD, malaysia lysosomal diseases association, ice bucket challenge

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