Riding with hope for rare diseases

A group of Malaysian cyclists recently completed a grueling 1,200km ride in 90 hours in Paris, France, as part of the Paris-Brest-Paris 2023 (PBP) cycling event. The PBP is a long-distance cycling event held every four years, and the goal is to finish the race within 90 hours. The group consisted of 44 Malaysian cyclists, including seven participants from the Ride with Hope initiative: Imran Halim, Cindy Yaw, Noraini Ibrahim, Aiman Firdaus Tan, Chan Yaw Nang, Kelvin Ong, and Lee Yee Seng. Their purpose was to raise funds for individuals affected by Lysosomal storage diseases (LSDs).

The Ride with Hope initiative is led by Lee, who has been the president of the Malaysia Lysosomal Diseases Association (MLDA) since 2011. Lee has a personal connection to LSDs, as two of his three children have Pompe, a type of LSD. The group has participated in PBP before to fundraise under the name “Friends with Hope.” The MLDA currently cares for 96 LSDs patients from all over Malaysia.

During the event, the Malaysian cyclists engaged with both local and international cyclists to raise awareness about LSDs. LSDs are rare inherited metabolic disorders caused by lysosomal function defects. Lee mentioned that their community has grown to include 1,500 members who share a dedication to the cause and are represented by the sloth mascot known as “Hope the Sloth.” Their cyclists are currently accumulating a weekly distance of 140,000km to raise awareness.

Lee emphasized that every pedal stroke during the ride had a purpose, which was the Ride with Hope campaign. The journey aimed to ignite a spark for children fighting LSDs and show them that they are not alone. LSDs are among 8,000 types of rare diseases, with treatments available for only 10 types at the moment. Lee hopes that the Malaysian government, under the leadership of Prime Minister Datuk Seri Anwar Ibrahim, will allocate adequate funds to support rare disease patients and improve their quality of life.

Imran, a participant in the Ride with Hope campaign, stated that their role was to pave the way for patients with LSDs and others facing adversity. According to Lee, their mission this year was to raise RM5.5mil, which will help procure booster vials for LSDs patients and provide financial relief, improved access to genetic tests, and enhanced newborn screening programs.