!/images/18.jpg (PSOD Launch)!
Last Monday saw a realization of a dream. The Philippine Society for Orphan Disorders was launched. A culmination of several doctors, parents and patients desire to form an organization to help support people with orphan disorders.
Orphan disorders are diseases that are very rare. Due to the rarity much help, resources and research are not put into these disorders. Thus “orpahaning them” Pompe is an orphan disorders since it affects only 10,000 people in the world. At least reported cases.
The PSOD was launched at the Makati Shangrila, Quezon B Function room last Monday, June 26, 2006. A simple lunch was served. A program was also presented. The first board and officers of the organization was inducted. My mom is the founding president which makes it all the more special.
Plaques of appreciation were also awarded to people and companies who have helped PSOD and patients even though the organization was not formally in place yet.
Recepients of the awards were Genzyme, Mead Johnson, PGH, to name a few. A plaque was also awarded to my aunt and her new husband for using their wedding as a vehicle to raise funds for PSOD. Instead of gifts they requested guests to give donations to PSOD. Thanks to their kindness the PSOD was able to raise the start-up capital that it needed to get things going.
Genzyme holds a special place in my heart as they are the ones manufacturing and providing Myozyme.
I gave a short speech representing the patients that the PSOD will be helping. It’s a short speech but I think was ok. You can “download a copy of my speech”:http://www.fightpompe.com/file_download/1 here.
Photos of the event can be viewed at “my flickr account”:http://www.flickr.com/photos/71239953@N00/sets/72157594180313174/.