PSOD Launch

!/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”: here.

Photos of the event can be viewed at “my flickr account”:

4 Replies to “PSOD Launch”

  1. i would like to take part sana kaso i don’t have that much financial resources.. ordinary employee lang po ako.. i am willing to volunteer my days off though.. pls advise.. thanks!

  2. Hi Dickoy,

    I’ve read your speech and it really was touching. I am glad that you were able to represent the patients that are not given much needed attention. I pray that more and more people will become aware of this illness and would extend a helping hand to your cause. God bless and as always, i said a prayer for you today.

  3. alam mo ang mga pilipino mahilig tumulong sa mga mahihirap wag kang mawalan ng pag-asa alam marami na akong kilala na nagtiyaga at naging matagumpay alam ko din na mangyayari sayo kaya wag ka mawalan ng pagasa wag kang maniwala na hanggang 30 lng ang abot mo

  4. Hey Kuya Dickoy,

    Just tell me if you need our help….all you need is ask and we will be there together with my 3itlog (Juni, Sean & Jai).

    Don’t get much time to scan through your blog but I do read it whenever time permits.

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