The Fight Pompe Campaign

The Fight Pompe Campaign is a fund raising and awareness campaign for Pompe Disease. Not to many people know about Pompe and this is my way of spreading the word around.

h2. Fund Raising

Battling Pompe is taxing in mind, body, spirit as well as finances. I’m sure you know how it is to be sick. Medical expenses pile up. What more for people who suffer from a disease such as Pompe, where it is a day to day battle. A lot of paitients such as myself require special medical equipment such as Bi-Pap machines, wheelchairs, medical aide, etc..

I’m actually quite lucky since up to this point, my family and I have done well in dealing with it. I’ve worked most of my adult life in order to help pay for medical expenses. Not because my parents asked me to but simply because I wanted to.

In the Philippines, the country I live in there’s no medical insurance such as the ones found in the U.S. or Europe. So up to this point much of the medical expenses are paid for by my family and/or myself.

The money that will be raised from the campaign will be used in the following things:

h3. Medical Expenses

If you’ve read through my entries here in “Fight Pompe”: you know that I’ve started a new treatment. I feel really blessed that I’ve been given the chance to have this opportunity.

However I’ve come to realize that the medicine will not be enough. I need to give this opportunity the best attention it deserves. I need to put in time and effort into getting better. Time, meaning giving enough time for my body to heal with rest. Effort, by putting empahsis in Physical Therapy. These two used to take a back seat to work before this. I think it’s time that it changes.

I plan to take a leave from work for this year. Well not a total leave but I will be cutting back significantly the time I spend at work to give way to Physical Therapy and other things needed to get better. This also means that I will take a significant pay cut. That being said, the medical and therapy expenses doesn’t stop. So with your help I hope to be able to do this.

h3. The Foundation

Together with the doctors that I’m working with, we plan to set up a foundation here in the Philippines. The foundation will aim to help people, especially children with rare disease such as Pompe.

I’m quite lucky to have been born to a middle income family. We’re still lucky that we are able to afford the medical needs that come with dealing with a disease such as Pompe.

A lot of people here aren’t so lucky. In a country wherein majority of the population live below the poverty line, there are a lot of people, especially children who need help. Having a rare disease makes that problem all the more difficult. The foundation will try to help ease the burden. I know that this might be a lofty goal but everything starts with a dream and a lot of hope that we can make a difference.

h3. Donation to the AMDA

The “AMDA”: is the first organization or Pompe patients and family that I joined. They have been doing a lot of good work for the Pompe community. They have funded and continue to fund projects for the Pompe community. From grants for medical research all the way to facilitating patient conferences, the AMDA has done a lot for the Pompe community.

A part of the proceeds from the fund raising will be donated to the AMDA. In a small way the donation will help them continue the good work for the community.

h2. Awareness

Apart from the fund raising and arguably the more important part of the Fight Pompe campaign is creating awareness for Pompe Disease. The more people are made aware of it the more people can help the patients. The first step in dealing with problems is to know what it is. As people get to know more about Pompe, the more they can understand what the patients go through. Just the same for cancer and aids patients. The main difference is that both these disease affect a lot more people than Pompe. Hence the more people know about them.

Still, even if Pompe affects a lesser number of people it doesn’ t mean it’s less important. People also need to find out about it and other rare diseases in hopes that they may be able to help the patients. Who knows maybe someone out there knows how to help Pompe patients better.

h2. How You Can Help

h3. Fight Pompe Merchandise

I’ve started developing some merchandise for Fight Pompe. You can find them at the “Cafe Press Store”: You can support the campaign by purchaisng the stuff there. Wear them so that Fight Pompe can gain visibilty. Right now I’m still starting so the merchandise is still limited but do come back from time to time as I continue to add to it.

h3. Spread The Word Around

Share the link to the Fight Pompe web site with your friends and family. If you have a web site or a blog, please add the Fight Pompe link to it. The more people visit this site, the more people will know about Pompe disease. That in itself is a big deal.

h3. Donate

If you’re feeling kind but you don’t want any of the merchandise or you’ve bought some already but still want to help, you can make a donation. I’m still setting up the donation facility but if you’re raring to help out, send me an “email” so I can give you ways to send the money.

From the bottom of my heart, my deepest thanks. In reading this alone you’ve already helped. You’re now aware of the Fight Pompe Campaign. You may or may not be ready yet to help but at least you know about it. You can always come back when you feel you’re ready.

Thank you and God Bless.

Juan Magdaraog
Fight Pompe!

One Reply to “The Fight Pompe Campaign”

  1. Hi! I salute you and your family! I would want to make a donation directly to you if that is at all possible.

    I read your entries and was totally inspired. I know a little bit ( I say little now that I’ve read your blog) of how it is to be sick and be told that there is no cure. It sucks but you learn to live with it. Though what I went through is not nearly as harrowing,as challenging as what you went or are going through. And unlike you, my dealing with it is not talking about it. Like it never happened. Truth be told, I am scared shitless about it. Have had sleepless nights for the last 6 years.

    On the lighter side,I know what you mean about needles. I’ve been poked countless times myself, threatened the resident doctor to make sure he finds the vein or else. But I am not so scared of it (I think) as you describe yourself to be. My husband is though. He hyperventilates literally before any extraction. Like he was about to go skin diving or something. He screams “WAIT?! Wait, not yet!” Then turns so pale. I was sooooo worried about him then when he was by my side watching all the doctors poke me endlessly while I was at the ER.

    Anyway, enough said. Please let me know where I can make a small donation.

    By the way, I am a member of PhilMUG, too and crazy about “Apples” as well.

    Looking forward to reading your future posts.

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