I am a Malaysian who is living with a genetic condition called Neurofinromatosis type 2. I was diagnosed in July 2002 and had my first two surgeries after diagnosis locally. During those treatments I observed that surgery for my condition in this country carried high morbidity and mortality risk. Besides, I also observed that there were many other neuro surgery patients in critical and debilitated conditions. I did not want to deteriorate or burden my parents, so I resolved to raise my own funds for treatments in USA to maintain my quality of life. In doing so, I have managed to survive longer and better than expected. Many NF patients in Malaysia, especially those NF2, die young. Now that I have managed to maintain my life and learned how to do so, it is time that I build a foundation to help my fellow patients do the same.
I have always wanted to help people and build a foundation. At the end of 2012, I felt that it was time to pursue that goal. I started off by exploring how to build my foundation in Malaysia itself. I needed RM1 million as capital before I could register a foundation in my birth country. I did not have that money. So I set out to raise it from scratch and even created a company Called Works of Gratitude to do it legally. But after almost four years of trying without much success, I finally accepted that the environment of my birth country was not suitable for such a revolutionary undertaking.
Eventually, I decided to do what I was used to – set up the foundation in USA and help international patients get treatments at a specific medical institution instead, an institution that treats NF. Currently I am working towards partnering with KECK School of Medicine at the University of Southern California and looking into registering my foundation in the US.
If you are interested in helping me achieve this goal, please email me directly.