My name is Yvonne Foong, or Ming Niang – as FAB’s staff used to call me. I am a 30-year old Malaysian author with a genetic condition that makes tumours grow anywhere in my body throughout life. In order to continue living, I started a project to fund my own life saving surgeries at the tender age of 19, to pay for my much needed lifesaving surgeries halfway across the world, in the United States.
I used to dance ballet as a child for 7 formative years before my diagnosis. My family sent me initially so that I could develop a healthy self-esteem. We did not expect, however, that the experience would benefit me much more when my life became more challenging unexpectedly.
On 12th March 2017, I will be giving a talk at the Fonteyn Studio Theatre, to share in detail how ballet has enabled me to thrive above all odds in spite of my health challenges and familial struggles.
Since January 2015, I directed all proceeds from the sale of books I authored to my foundation fundraising, hoping that doing so will boost support for the project and speed up the fundraising progress. Many books have been sold for that purpose and funds received were duly placed into the foundation fund. However, a few people misunderstood my intention, falsely speculating that I was using foundation funds on myself.
The foundation I am building has been my dream since the day I was diagnosed 16 years ago as I have always wanted to assist humanity in a big way since I was a child. To prevent the aforementioned misunderstanding from becoming widespread and hampering my dream, I have decided to redirect the funds from the sale of my books to myself, for my own livings, from December 2016 onward. As for foundation fundraising, I will henceforth focus on getting sponsors for the foundation. No longer using my own intellectual properties.
May this make things clearer. Books for me. Sponsors for foundation.
I have been transferring my own medical records from my previous treatment centers to Keck School of Medicine gradually the past few months so that Dr Friedman and his colleagues can start managing health condition for the long term.
My last brain surgery to remove an acoustic neuroma at NIH made me feel strongly that I should go back to previous surgeons who are experts in NF treatment and would be able to take better care of me.
The post operative care I received at NIH after the recent acoustic neuroma surgery was regrettable and costly to me. In the long term 6 years ago, I decided to join the NF2 study at NIH for the medical benefit but the last post operative care made me realize that, I should take care of myself for the sake of my foundation project and I should not let my own health be compromised or sacrificed in any way.Because I felt that I needed to relief myself from the need to fund my own treatments in order to build a foundation to help other patients.
I decided to get my own treatments at Keck as well, or thought of partnering with them as a foundation, because they were also the doctors who know my medical history best. Plus, achieving 2 objectives at the same place would be most ideal.
This is going to be a leap of faith for me because it means that I need to pay my own treatments again. But it is a necessary leap because I have an important mission in life and to fulfill my mission I have to maintain my own quality of life. I have just written my 2nd book which I hope will earn me the means to pay for my treatments at Keck because the foundation will only subsidize treatment cost for everyone partially including myself. It would not be empowering otherwise.
So, work by faith, I shall and not by sight. Literally.
After I came back from NIH in March 2016, some people who had known me from way way back seemed to have become mentally unhinged and questioned me on my usage of funds openly, implying that I was using funds meant for my foundation project for my own needs. I found it absurd for they should know me better than that, I intended to ignore but their actions could confuse people who do not know me personally. So here I am attaching a letter from Sin Chew Foundation to me. It can show you where funds for my own treatments came from.
In early 2012, I had a health scare and thought I needed emergency treatment. Some supporters informed Sin Chew Daily. Representatives from their foundation visited and wrote a glowing feature in their newspaper. They did not paint a pretty full picture of me. They simply showed what I have done with my life. That alone was enough to generate much public support from the Chinese literate community of peninsula Malaysia. But I later found out that I did not need immediate surgery so I used this fund for my continuous treatment gradually over the next three years, from mid-2013 to mid-2016.
I am very loved by people. If I ever need funds for myself all I have to do is ASK. So I don’t need to conspire and come up with a think foundation project to get money for myself.
I only need to be honest. Honestly ask and then people will help me with my personal financial needs.
Yesterday, a friend of mine visited me at home and told me that someone had publicly questioned my integrity on Facebook, referring to my foundation fund raising. This happened sometime in April 2016 when I had just returned from three major surgeries in US. At that time, I was struggling to adapt and adjust to my newly damaged vision so I could not read anything. Plus, I was extremely fatigued and slept most of the day. When my friend cautioned me , I felt a little troubled but mostly surprised because I was raising funds using products that were originally meant for my own medical costs. I was merely diverting the funds to help others instead.
So I spent my quiet time alone introspecting and decided for myself that, if the public absolutely doubts my integrity, I am prepared to pass on the funds that I have raised for my foundation project, to another existing charity so it can use them to help NF patients instead.
This charitable society, however, does not have the means or resources to help complicated and critical NF cases get lifesaving treatments. No local entity does, which is why I am attempting to build a foundation for that purpose.
Although it is limited in its ability to help complicated cases, it can assist the mild ones. At the time of writing this post, I have in my hand, RM40,000 meant for building my intended foundation. If the public absolutely doubts, I am willing to let it go.
I can still assist other NF patients in non-monetary manners like I always have been doing. Money is not important to me. Love is.