On April 2019, Ir.Lee Yee Seng the president of MLDA started the Hope Mission to raise funds for LSD patients. Until now, MLDA received much support and donation through the adoption of Hope, MLDA's mascot. However, Ir.Lee has bring this mission to the next lever, international level. Rather than raising funds for LSD patients, he aim to create awareness internationally. The main objective for this campaign is to raise RM 1 mil funds besides creating awareness around the world regarding Lysosomal Storage Diseases (LSD) and other rare diseases. The fund raise will be distributed for patients welfare & subsidies, medicine purchase, genetic screening, medical apparatus procurement for patients, purchasing medical apparatus in HKL and fund for MLDA future activities.
4 Malaysia riders Ir Lee Yee Seng, Faye Tan & Ben Chong Jun Keong will be taking the lead in this PBP Challenge, they are challenging themselves in the pursuit by helping rare disease children in Malaysia by initiating Riding with Hope Program, which was the brainchild of MLDA president Ir Lee Yee Seng. For Ir Lee, despite only started in Audax 2 years ago, the idea was twofold: how to raise additional money for MLDA Charity, but also enhance enhance the experience for any rider who was able to make as much donation as possible from this event. MLDA will be working together with Audax Randonneurs of Malaysia(ARM) in April to attract Malaysia riders, to get their support to this charity ride. The program is always there to remind everyone that it’s with each pedal stroke that we should be reminded those less fortunate, of those ailing and even those who are no longer with us. The ride in PBP is hard, which for the entire team, only makes the day more joyous and meaningful!
The success of this project is measured in the number donation raise from this campaign. If every participant can help us raise RM 1,000, then 1,000 people can successfully raise up to RM1 million throughout this campaign. Participants can join Riding with Hope campaign sharing their fund raising activities in the FB page, they can walk, run, ride, hiking, do charity sales and many other activities make it as viral as possible, people in social medias now have an idea there is rare diseases and the children or patients are having difficulties which normal people are not able to comprehend. Through this, we are also able to educate the younger generation that not everything in life is honey and roses. There are many things we have to feel blessed for and the main one is health. With more awareness of rare diseases, teachers and counsellors will be more sensitive towards the needs of rare disease patients while attending their schooling.
Awareness is the key to unlock the assistance and help this special group needs in order to survive and live a life as normal as possible. Without awareness people will question the allocation of budget by the Ministry of Health, peers will laugh at rare disease children in school for having short stature or sitting in a wheelchair, parents will face hardship in work as they need to bring their children for ERT at a weekly or fortnightly basis, parents will also blame themselves for something which they cannot control and many more which we cannot foresee.