Being a patient or I better call myself and others as a Spartan, someone who is fighting for something each and every day.” –Thilip Kumar Ragavan We first met Thilip Kumar Ragavan in May 2014. He was a young chronic myeloid leukemia Spartan in the patient workshop at Hospital Ampang and was newly diagnosed with CML at that time, but the smile never left his face. Bright, vibrant, energetic, and positive – that's Thilip.
This year, the Malaysia team set a goal of creating deeper connections in our local patient initiatives. We wanted to see our patient community connect with each other. We changed the format of our patient...
In the last decade, we have reached over 10,000 patients and caregivers in Malaysia. This has been one of the most significant things in my journey with The Max Foundation: the opportunity to work with so many amazing individuals – each one of them teaches me the meaning of life, shows me the courage, and prove that nothing is impossible.
“I saw inspiration when I met him for the first time. That’s the day I decided I want to be a source of inspiration for others.” Max Family Malaysia celebrated 10 years of service to cancer patients in Malaysia by sharing stories and song, and remembering those that have served as an inspiration to others.
We've already seen lots of activity around the world this spring: The first gastrointestinal stromal tumor patient meeting in Hyderabad, India; storytelling workshops where people facing cancer learn to share their experience with dignity and hope; and the Malaysia patient team takes their gathering public with a great picnic! See what else has been happening at The Max Foundation during the first part of 2016.
For many patients, there aren’t many opportunities for them to learn about their disease directly from experts. So when the opportunity to hear from a hematologist at Naresuan University Hospital in Thailand, we were excited to maximize the event.
People, by nature, are not perfect and sometimes we forget how to love each other well. The dinner at the Rising Sun 2015 meeting prepared by MaxSmiles Thailand, was a reminder to me. Admittedly, I attended the dinner with the intention of eating as much Thai food as I could. Wirat, Thailand Senior MaxStation, reassured me that I would not be disappointed that night. He was totally right; who would’ve thought the dinner would feed my soul.
More than 45 patient advocates came together for the 2015 Rising Sun meeting in Bangkok, Thailand on October 9-11. Rising Sun, the Asia Pacific regional event, is an initiative driven by The Max Foundation in partnership with local patient groups that aims to enhance the capacity of patient-advocate leaders, increase the well-being of patient communities, and raise disease awareness through learning and sharing opportunities.
Nothing is more powerful than storytelling, especially when it's told from a person's first-hand experience. In the Asia Pacific region, we are often known as “shy” community. We do not often share our stories publicly, especially a story about cancer diagnosis. We often have no one to turn to because we do not want our parents to worry; we do not want our children to feel the burden; we do not want to tell our neighbors who might be starting to avoid us because we are diagnosed with cancer.
For people living with chronic myeloid leukemia (CML), regular disease monitoring using polymerase chain reaction (PCR) testing is critical to achieving successful health outcomes. Mutation testing is another key test for individuals who fail to respond to one or more treatments. Despite the importance of these tests, they are unaffordable and therefore inaccessible for many people living with CML in the Philippines.
On October 23rd we visited the out-patient department of the Philippine General Hospital to distribute a recent shipment of hats that we had received from With Love in Every Stitch. It was amazingly beautiful to see the faces of small children queuing up to choose the hats they liked. The children were fascinated with the colors and designs of the hats. They gladly tried them on and proudly showed them to their parents and the other children.