Press Release: Rare feat! Father scales Borneo’s Highest Peaks to raise awareness and fundraising for children with rare disease

Sivasangaran Kumaran isn’t your everyday father of two.

That’s because on August 30th 2018, he’ll be climbing the majestic 13,435-foot Mount Kinabalu.
Siva with other Rare Disease patients and their family
Sivasangaran, a Senior Service Deliver Manager with Microsoft Malaysia, will be climbing Mount Kinabalu in an effort to create public and authorities awareness on challenges faced by Malaysia rare disease children’s and their caregivers.

With this feat, Sivasangaran also aims to raise RM50,000 for MLDA – the association whom came to aid of his then 6 month old daughter Swathi Nisha Nair, when she was diagnosed with Infantile Pompe.

Climbing Mount Kinabalu certainly won’t be easy. It will take Sivasangaran 2 days to reach the mountain’s summit. Along the way, he will stay at different points on the mountain, as he travels through different ecosystems and faces low temperatures, high elevations and the occasional high winds.

“The oxygen levels and altitude will surely be challenging for me,” Sivasangaran said.

Siva has a personal connection with rare disease.

“My daughter Swathi, suffers from Infantile Pompe disease, an inherited disorder caused by the build-up of a complex sugar called glycogen in the body's cells. The accumulation of glycogen in certain organs and tissues, especially muscles, impairs her ability to function normally, he said. “Before Swathi diagnosed, I did not know just how many parents and children were affected with rare diseases.”

With this mission, beside the goal to fundraise, it also a journey to re-emphasize the need of government continuous funding for the rare disease chidlren’s lifelong treatment, comfortable and proper treatment area, elevate rare disease awareness among public, authorities, and medical professionals. Equally important for government to establish rare disease and new born screening acts. All this with hope to save innocent life’s and help diagnosed rare disease children’s equal right just like any other citizen of Malaysia.

“My hope is to not only reach the summit myself, but also to support rare disease children’s and everyone who needs support for rare disease,” Sivasangaran said. “The mountain is only a correlation of the battle our children with rare disease face every day. “I am certain that this life-changing experience will be a moment I will never forget.”

To support their fundraising goal, donate to Pertubuhan Penyakit Lisosomal Malaysia
Public Bank Account Number 3169692035 (Donation reference MKJ4R).
This event is also supported by the Make It Right Movement powered by Brickfields Asia College.

For press inquiries, contact
Mount Kinabalu : Journey for the Rare (
Sivasangaran Kumaran
+6012 368 4548

About Malaysia Lysosomal Diseases Association
Malaysia Lysosomal Diseases Association (MLDA) is a non-profit organization which advocates for patients’ rights to a sustainable healthcare and support system. There are about 50 different types of LSD diseases which mostly affect children who often die at a young and unpredictable age, many within a few months or years of birth. Access to such medical care and services are hard to come for many LSD patients, causing undue suffering and despair. MLDA dedicated to improving the lives of all patients afflicted by Lysosomal Storage Diseases (LSD) by creating greater awareness of the Lysosomal Storage Diseases (LSD) and developing and sustaining an effective patient community network that provides comprehensive support for the ever-increasing needs of individuals and families affected by Lysosomal Storage Diseases (LSD). The MLDA also offer to provide their members with the latest information on LSD, opportunities to build strong support networks and the access to the latest medical services around the world, counselling services, and financial advice and support to reduce financial issues. Find more information about how MLDA helps their patients at

About Make It Right Movement
Guided by the belief that together we are limitless, The Make It Right Movement (MIRM) works to help foster greater awareness and help people lead healthy, productive lives through its partnerships with government, private and public sectors. This movement works in tandem with communities from all walks of life to ensure their long-term sustainability and growth by leveraging off the Malaysian public’s commitment to social services. It also seeks to ensure that all people with very little access to resources have equal opportunities they need to succeed, sustain and focused educating the public on doing the right things for good. The Make It Right Movement (MIRM) is powered by Brickfields Asia College (BAC) and founded by Raja Singham, Managing Director of the BAC Education Group. For more information about MIRM, visit or follow us on Facebook (/MakeItRightMovement), Twitter (@MakeItRightMy) and Instagram (@MakeItRightMovement).


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