Hello everyone

This is Yvonne Foong here. It has been more than half a year since I last updated this blog. The reason is because I had been receiving medical treatments at the US National Institute of Health in Vethesda between January – March 2016. I had 2 brain surgeries and 1 more surgery to remove a finger tumor plus implant a peg tube. I returned to Malaysia in March and spent the next few months recovering. After my 3rd surgery, my vision was affected due to severe dryness and physical stress. Now that my vision was not good like before, I had to adopt and learn a few way of living.

For example, I am simplifying my personal life and the manner I live the NF foundation. After struggling for 3 months, I finally found a great person to be my personal assistant. I let her help me do my work by my side. Maybe my vision deterioration is not entirely a bad thing because if this did not happen, I would have insisted to do everything myself out of habit to the point of over stressing. It was not easy to change the way I was. Physical stress is actually bad for my genetic condition. It could make NF 2 more aggressive.

I am also allowing other individuals to raise funds for this project instead. Like how my friend Audrey Yeoh the rolfer is doing her part. She is offering her skills to 5 people. RM2500 for 10 rolfing sessions each person. If you are interested in rolfing you may contact her directly by WhatsApp (012 323 3218).

Considering the economic and political instability of my country, I decided that it would be best to set up NF foundation in US instead and work with my surgeons and medical teams there. My foundation would assist Malaysians with NF want to go to US for treatments for a better chance of survival. It is up to the patient’s choice of whether he or she wants to go. Not all NF patients require treatments overseas. Small cases can be treated in Malaysia. Severe cases are the ones that need doctors with better abilities to treat and hospitals that are more equipped to care.

On 22nd April 2015, Malaysia’s national newspaper The Star has featured Works of Gratitude’s NF Awareness Workshop at Taylor’s College on the internet. It also included a video recording of WOG’s Project Director Mr. Sha Kok Tein and I addressing the audience at the 14th Hear Us Out Global Issues Conference’s closing ceremony. Below is the said video recording.

The video above was recorded by a columnist in The Star. Here’s the accompanying article. Thank you for lending our cause a voice, Mr. Tan Yi Liang!

NEUROFIBROMATOSIS Type 2, or NF2 for short. A mouthful, isn’t it? Wouldn’t disagree there. Sounds alien, even dangerous. It certainly sounds like word salad!

When I first heard of it 10 years ago, I didn’t think very much of it, truth be told. To me it was a tongue-twister of a genetic disorder, one that a friend of mine happened to have been born with.

I could barely pronounce it, let alone understand what it did to the bodies of those living with NF. As it was, I understood at the time that it is an incurable genetic condition which causes non-cancerous tumours to grow anywhere in the brain, along the spinal cord and central nervous system.

This means that for someone living with NF2, their brain, spine and nerves are filled with an assortment of growths. These tumours can cause deafness, blindness or paralysis — or all of the above.

What I certainly didn’t know then was that NF2 is the most common genetic disorder out there, more common than cystic fibrosis or Down Syndrome, affecting one in every 33,000 people worldwide. Continue reading

18th April 2015 was a turning point in Works of Gratitude’s journey to champion the Neurofibromatosis cause in Malaysia. Prior to this, I have been conducting seminars and workshops at the bi-annual Hear Us Out Global Issues conference in Taylor’s College by myself, representing my personal cause named Heart4Hope for six years, and later on, representing Works of Gratitude mostly alone on the frontline. But yesterday, I was joined by Mr. Sha Kok Tein, who recently volunteered to carry the NF flag with me as WOG’s Project Director pro bono.

Yesterday was our 1st time conducting an NF Awareness Workshop together. I spoke about my early life with NF and taught the students in attendance on the condition as well as the science of it, followed by major issues NF patients face in Malaysia. Sha then enlightened the class about our quest to build an NF Resource Center by 31st Dec 2015 and an NF foundation in the country to address the issues mentioned. The following Question & Answer session was more alive with Sha along than it would have been if I was alone, because he could hear, and he probably looked more capable of doing the heavy-duty groundwork – haha! The students asked him a lot of questions on NF and how they could help. Sha answered them succinctly.

At the conference closing ceremony an hour later, we were kindly invited to address the entire conference in the lecture theatre with a short speech too. I told the audience who I am, what I have been through and the distances I went to preserve my own life. Having experienced the tribulations that come with battling this genetic disorder and understood human suffering, I dedicate my life to assisting other patients in need. Hence, my team and I are working to build an NF foundation in Malaysia.

After the speech, many students crowded our booth outside to help raise funds. Alfin Majid was the WOG volunteer who patiently and meticulously handled the sales. A total of RM601.00 was earned from sales at the event itself. Some students did not bring enough money so they placed orders instead. The conference organiser will also be making a lumpsum donation later. While Alfin was busy attending to buyers, Sha and I attended to a mini press conference right next to the booth!

This day was a turning point in Works of Gratitude’s history also because our mission has grown and our contribution to society is about to leap-frog!

More info available at www.worksofgratitude.com

Contacts:

Yvonne(at)worksofgratitude(dot)com

Koktein(at)worksofgratitude(dot)com