A total of 44 Malaysian cyclists participated in the Paris-Brest-Paris 2023 challenge.
IT WAS a journey of endurance, hope and community building for a group of Malaysian cyclists who rode 1,200km in 90 hours in Paris, France.
A total of 44 Malaysian cyclists converged in late August for the Paris-Brest-Paris 2023 (PBP), a long-distance cycling event from Paris to Brest, and back to the French capital, which is held every four years.
The goal is to finish the race within 90 hours.
Their numbers included seven Malaysians who were part of the Ride with Hope initiative, comprising Imran Halim, Cindy Yaw, Noraini Ibrahim, Aiman Firdaus Tan, Chan Yaw Nang, Kelvin Ong and Lee Yee Seng.
They completed the challenge to raise funds for those impacted by Lysosomal storage diseases (LSDs).
For engineer Lee, 48, who has been the Malaysia Lysosomal Diseases Association (MLDA) president since 2011, this was particularly special for him as two of his three children – daughters Yen Ling and Wei Ling, ages 23 and 19 respectively, have Pompe, a disease that is part of LSDs.
“I joined PBP four years ago to also help fundraise; our cyclists are called Friends with Hope.
Lee (fourth from left) and Imran (fifth from left) are among the Malaysian cyclists involved in the Ride with Hope fundraising campaign to help those impacted by LSDs.
“This is the second Ride with Hope with PBP; we want to make this an ongoing initiative.
“Altogether, we have 96 LSDs patients from all over Malaysia under the care of MLDA,” he told StarMetro.
The team also engaged with local as well as international cyclists, and highlighted the importance of understanding LSDs.
LSDs are a group of approximately 50 rare inherited metabolic disorders caused by defects in lysosomal function.
Lee said their community had grown to 1,500 enthusiastic members united under “Hope the Sloth” and a shared dedication to the cause.
Currently, he said, their cyclists were accumulating 140,000km weekly to raise awareness.
The sloth represents LSDs patients like Lee’s daughters who have muscular dystrophy where their movements are slow.
“Every pedal stroke was fuelled by a purpose which was Ride with Hope.
“We rode not just for personal triumph but for children fighting LSDs.
“This journey was about igniting a spark for these children.
“We refuse to let them be alone,” he said, adding that LSDs are part of 8,000 types of rare diseases.
“We only have treatment for 10 types of LSDs at the moment, which is enzyme replacement therapy.
“Certain types of LSDs can be treated with bone marrow transplant before the age of two.
“Even with enzyme therapy, treatment is lifelong,” he said.
Lee said the Ride with Hope Cycling Club had committed to cycling one million kilometres through Strava, a leading platform for movement.
“It’s encouraging to hear about the Malaysian government’s commitment to eradicate poverty and supporting vulnerable communities, including rare disease patients.
“We hope under the leadership of Prime Minister Datuk Seri Anwar Ibrahim, adequate budget allocation for patients with rare diseases will be given to help them live better by improving their quality of life,” said Lee.
Imran, 44, who joined Ride with Hope last year, said their role in the campaign was to pave the way for patients with LSDs and others facing adversity.
“The larger our peloton (pack of riders), the stronger our collective impact,” Imran said.
Lee said their mission this year was to raise RM5.5mil, which will not only assist in procuring crucial booster vials for patients with LSDs but also offer financial relief, improved access to genetic tests and enhanced newborn screening programmes.
