How To Help

Several people have talked to me, emailed, sent messages asking how they can help. Well there are several ways that you can help. But first, determing how you can help means asking yourself you you want to help. I’m personally advocating for several organizations not just asking for help personally. You can pick from these and help out any which way you can.

You can help the ff:

h2. PSOD (“Philippine Society for Orphan Disorders”:http://www.psod.org.ph )

The PSOD is the organization that we recently launched. It aims to help people with orphan disorders such as Pompe’s Disease, Gaucher’s Disease, Maple Syrup Urine Disorder and others. The goal of the PSOD is to create awareness for orphan disoders, develop a national registry for the diseases, support research and help in policy formation.

The PSOD is a new organization and we’re at our “growing pains” stages. It will evolve over time and hopefully with people’s help it can help improve the quality of life for people with orphan disorders here in the Philippines.

If you want to make a donation to PSOD or have any ideas on how to help please send an email to “info@psod.org.ph”:mailto:info@psod.org.ph or send me an email and I’ll make sure they receive it as well.

h2. AMDA (“Acid Maltase Deficiency Association”:http://www.amda-pompe.org )

Acid Maltase Deficiency is also another name for Pompe. The AMDA has been at the forefront of the battle against Pompe. It’s one of the leading patient groups for Pompe and responsible for helping push the advancement for Pompe research and treatment.

I belong to the AMDA and I as well as countless patients owe a lot to the AMDA.

If you want to help the AMDA you can go to their “website”:http://www.amda-pompe.org and make a donation. There’s a paypal donation button there that you can use to donate.

h2. Fight Pompe

If you want to help me personally I would also appreciate it. I’ve thought of several ways you can.

*Fight Pompe T-shirts* – I’m selling some shirts at my “CafePress Store”:http://www.cafepress.com/fightpompe you can buy a shirt there. Profits from the t-shirts will go to helping me Fight Pompe. If you want to help me, why not get a shirt out of it. The shirts also help create awareness.

*Simple Donation* – Don’t want to buy a shirt and you just want to send a donation? That’s fine too. I’d appreciate that as well. Just send me an email or leave me a message here and I can give you options on how to do it.

*Spread the word* – Just by helping spread the word about Fight Pompe and getting people to read my blog is help enough. The more traffic I get the more people will be aware about Pompe. Awareness is the first big step against the fight.

All the help I get from Fight Pompe will go to funding medical expenses and other related expenses that help me fight this disease not just for me but also for other people. I’ve always believed that before I can help others I also need to help myself so I can be strong for others.

2006 has been both an exciting as well as a hard year. Exciting because of the treatment I’m getting. Hard because it’s also an expense that not only takes it toll on me personally but my family as well. I’m not complaining though. It’s been great.

The rest of the year holds so much promise not just for me but for other Pompe patients and the PSOD. I hope that we get to accomplish a lot.