It was World Neurofibromatosis Awareness Day last Thursday on 17th May 2012. Friends and members of the “Neurofibromatosis in Malaysia” Facebook support group gathered at McDonald’s, Subang Parade in fancy dresses and clothing that night for the first time since the group’s creation in 2007.
Carly Jim, an NF patient in Manchester, UK, created the campaign “Fancy Dress for NF” which encouraged patients and supporters to wear fancy dresses on 17th May and tell someone why, to raise awareness for this genetic disorder. Carly was collecting photographs of us in our fancy dresses to be made into a calendar for raising even more awareness.
But instead of just wearing my dress and camwhoring by myself, I took this opportunity to organize a gathering for members of the FB support group so that we could all camwhore together. 😛 The photos you see at the top of this page are some of the photos taken by the ever helpful Yee Fan. Carly decided to use our group photo for the calendar since many other patients around the world are participating and calendar pages are limited.
Not everyone present had their photos taken though. This is only 2/3 of the people that came. It was my intention to keep this gathering small. I was concerned that supporters might outnumber the patients, which will result in the patients feeling left out. So I didn’t do much publicity for this event besides a quick FB mention on the day itself.
Given the option between patient support and raising awareness, I’d prioritize the former in an event such as this.
Much thanks to Jiande for assisting me in organizing this gathering, to Syahidah for bringing us desserts, to Yee Fan for taking our photos pro bono, and to everybody who came. You made our first ever gathering a heartwarming success!
I was glad for the opportunity to know more fellow Malaysians living with Neurofibromatosis like me.
It is has always been my hope that by living life to the fullest, we will remind people not to let our physical condition define our lives. One of the hardest challenge an NF patient has to face at the beginning is living with an uncertainty about the future. For example, someone about to complete his postgraduate degree may have thought an active, high-achieving life was ahead of him until he was suddenly diagnosed with NF one day. I hope to encourage the newly diagnosed not to lose hope. NF is not the end of your dreams. In fact, it may just be the beginning of a meaningful and purposeful life.