The Malaysia Lysosomal Diseases Association (MLDA) was formed in 2011 by the hands of eight families. Their goal was to raise awareness and funds for those diagnosed with lysosomal storage diseases (LSDs). There are more than 50 different types of LSDs and without adequate access to medical care, many in Malaysia die far too young. The MLDA works to provide financial support and counseling to LSD families and serves as an informational resource for those seeking to learn more about these diseases. The MLDA covers Lysosomal Storage Disorders, Pompe Disease, Gaucher Disease, MPS Type I, Hunter Syndrome / MPS II, Fabry Disease, and MPS VI.
The MLDA in action
Sivasangaran Kumaran is just one of the many individuals who the MLDA has worked to support. Kumaran’s daughter was diagnosed with Infantile Pompe disease at only 6 months old. Pompe Disease is a genetic condition where glycogen builds up in the cells of organs, tissues, and muscles and impedes the patients ability to move and function normally. Kumaran wants to give back to the organization who came to his aid after his child’s diagnosis.
On August 30, Kumaran climbed Mount Kinabalu, a 13,435 foot mountain in effort to raise RM50,000 for MLDA.
The climb took two days and was full of obstacles. Temperatures were extremely low, high elevations and high winds caused impediments, and crossing through different altitudes and oxygen levels along the way posed various challenges. But Kumaran explains that climbing Mount Kinabalu is nothing compared to what individuals living with rare conditions have to handle all the time.
“The mountain is only a correlation of the battle our children with rare disease fight every day.”
Besides his financial goal, Kumaran says he wants to work to increase understanding that supporting those with rare conditions like LSDs needs to be a lifelong commitment. He speaks about how impactful newborn screening acts could be in Malaysia and the necessity of government support to implement such policy. Each rare disease may be rare, but together they’re much more common than we may realize.
Kumaran also emphasizes the fact that rare diseases don’t just impact the individual who has the diagnosis, but their caregivers and their families. Its life-altering news for all involved and there are many ways that the public can work to support those impacted.
So what can we do?
Ultimately, its not just people in the medical field who can help those living with rare conditions like Pompe. Those in every sector can have an impact- we just have to take a moment to think about how we can best serve. One of the easy ways to make a difference is by donating financially to an organization like the MLDA who directly helps rare disease families.
Support for Kumaran
Kumaran’s efforts were also supported by the Make it Right Movement. They are an organization who works to foster awareness for various issues among the private, public, and governmental sectors. Their goal is to ensure equal access, equal opportunities, and increased education.
You can read more about Kumaran’s efforts, the Make it Right Movement, and the MLDA here! Remember that every read and every share is a small contribution to the spread of awareness for all rare disease.