I often re-visit and re-consider my choice as to how the foundation’s RM1million capital should be acquired. One common practice is for a group of people to come together and advocate for the cause – touting the severity and morbidity of Neurofibromatosis in public, perhaps highlighting a few real life cases with photographs and write ups to prove the point. The idea of this strategy is to grab people’s attention fast. It will work. Funds will come in, but…
The activity will conjure fear in patients and the general public, as they are reminded of NF’s morbidity and life’s mortality. It will arouse contempt and discontentment at the perceived injustice that NF patients face. At the end of the day, we will meet the RM1million goal, but at the expense of people’s mental and spiritual wellbeing.
Neurofibromatosis patients all over Malaysia and the world will be observing this campaign. As it is, many people with NF believe that their life is cursed because they have NF. They believe it’s fated, there is nothing they can do but to endure it, and that death is imminent. Many of them have lived in darkness all their lives this way. I assist patients acquire proper medical treatments all the time internationally – they don’t just need physical assistance, they need moral support and guidance too.
Because I work with people so closely, I understand their positions and what they need or don’t need. Even though the strategy mentioned above will generate immediate funds, I cannot bring myself to it.
It goes against my moral conscience.
Most people already know what a genetic disorder like NF causes the moment we mention it’s incurable and tumors grow all the time. In the public’s eye, NF is just another disabling condition and sad reality like all other terrible illnesses. To try and insist that NF is more worthy of their support than other terrible illnesses means we will have to say that NF is worse than the rest, and you can imagine the kind of message and vibe we will be sending out.
Not good, right?
Every time I revisit my decision and plan, I would still come back to the same belief – it is better to let people support this mission because they support me and what I set out to do.
Other than providing patients with monetary assistance to acquire proper medical care, I want to inspire the public into appreciating their lives. Too many people don’t realize how precious life is and how worthy they are.
I intend to shape A Celebration of Life foundation to be an inspiration of hope, faith and love in this world. Similar to what I have accomplished with my Heart4Hope campaign, A Celebration of Life foundation will do even better.
And to do this, I would need to collaborate with key people who can generate the needed support. We would generate support with love and faith, and not by fear.
As the Foundation director, I can’t raise this RM1million capital by collecting cash contributions personally. It has to come in through third parties. This is why I need to collaborate with people, people who support what I have done and what I set out to do with my life.