New Fight Pompe Products At Cafepress

I just updated the “Fight Pompe Cafepress Store”:http://www.cafepress.com/fightpompe. Some new things to note.

1. *Premium Store* I upgraded the store to a premium store. The reason being is that with a basic store you can only sell one design per item. Ex. you can only make on design of the Ringer T shirt. You can’t add new designs to that particular shirt. The work around to this would be to open another basic store for a new design set. I didn’t want to do that. With a premium store you can make unlimited designs for a particular product.

It was also a good thing that Cafepress decided to offered to comp the first 6 months of the premium store. Which means it’s free for the first 6 months. By that time, I hopefully should have raised enough funds to pay for the monthly payments.

!/images/17.jpg (Families Unite to Fight Pompe T-shirts)!

2. *New Designs* I added a new shirt design. If you’ve read my post on the “2nd Fight Pompe Illustration”:http://www.fightpompe.com/article/43/2nd-fight-pompe-illustration I incorporated this to some shirts. Although I did modify the design a little. Watch the “Fight Pompe Store”:http://www.cafepress.com/fightpompe and this blog to for new products. I’ll be adding them in the next few weeks.

Hopefully these new changes wil mean good things for Fight Pompe. With Myozyme coming out in the market the Pompe community should now be really creative in looking for ways to make sure that every single patient gets Myozyme regardless of financial situation. Hopefully Fight Pompe can help even in a small way.

Myozyme Gets Broad Approval by the FDA (Yahoo!)

April 28, 2006 is a very special day for the Pompe Community. The FDA approved a biologics license application for Myozyme. Bringing to reality that a treatment for Pompe disease is now available for patients.

This is truly a day worth remembering. It’s a big thing for Pompe patients like me. It’s a fulfillment of a life long dream to see a treatment for this dreaded disease. It now gives patients something to look forward to.

While the approval of the FDA is great news, this is just the beginning. We’ll have to see how soon and if all patients will have access to Myozyme. It’s going to be expensive. I just hope that Genzyme, government agencies, patient organizations, other non-profit organizations and patients themselves all work together to make sure that no one suffering from Pompe disease doesn’t have access to Myozyme just because he/she can’t afford it. One of the greatest injustices in the world is people not having access to medicine just because they don’t have money. The treatment is there and the stumbling block is money. It shouldn’t be that way…

Enough of that, it’s a great day!!! Congratulations to Genzyme for getting the product to market. Many thanks to the FDA for approving Myozyme for the broad approval. Thanks to the patient organizations such as “AMDA”:http://www.amda-pompe.org for the tireless effort in pushing for a treatment. Lastly, good luck to all Pompe patients and their families, this is the start of a new life for all of us. Let’s hope it goes well…

Genzyme’s press release can be found “here”:http://www.genzyme.com/corp/investors/GENZ%20PR-042806.asp and the FDA’s press release can be found “here”:http://www.fda.gov/bbs/topics/NEWS/2006/NEW01365.html

Now as Kool & The Gang sang…

bq. Celebrate good times, come on! (Let’s celebrate)
Celebrate good times, come on!
It’s a celebration!
Celebrate good times, come on! (Let’s celebrate)

An Evening At San Miguel

With a simple thank you and God bless, I ended my talk at the Corporate Library of San Miguel last evening. A warm round of applause followed the end of my simple sharing. Around 20 of San Miguel’s employees took time off their busy schedules to attend the April learning session.

I was invited last March by Bong from the Organizational Development arm of San Miguel, to give a talk at one of their monthly learning sessions. This is part of their Values Program to further instill the corporate values of their company.

Every time I’m given a chance to speak in front of an audience I make it a point to try my best to do so. It’s something that I’ve been doing as a way of giving back. I want to share the unique experience I’ve gained, insights I’ve been blessed to have as a result of living with Pompe. Truth be told I’ve learned a lot because of Pompe.

Some might say that having Pompe is a negative experience, I look at it as something positive. As much as living with Pompe is a constant struggle, I’ve learned so much from it. Of course life would be easier if I didn’t have it but I might also not be the person I am today if I didn’t go through it. I like who I am today.

The setting at the learning session was an intimate one. A few chairs and couches were prepared. The atmosphere was cozy. I shared with them several stories which were tied to specific lessons I’ve learned and lived by all these years.

From lessons on ThisAbility (turning a negative into positive), success as a process, being the best you can be, trying as the first step to success and faith, I’ve tried to impart to the audience how all these things have helped me get to where I am today.

From a distance where I am right now might not be much but looking closely and examining the road I took to get to where I am, you then realize that to a certain extent I am successful.

My teacher in highschool once wrote on top of our blackboard “Success is not where you are but how you get there”, it’s been one of the most valuable lessons I’ve learned in my life. This has also been echoed by renowned leadership guru John Maxwell in one of his books where he stated “Success is a process”.

To the people at San Miguel who watched and took time out to hear me speak, my deepest thanks. It’s been a great experience for me as well.

10th Infusion

I just came back from my 10th infusion last night. Like most of my infusions it went well.

Some new things though. One, we brought along my new aide. Temporarily taking the place of my old one. My new aide, Junior is the brother of Mike. He’ll be taking Mike’s place till he comes back from vacation. How long… I’m not really sure. It’s an indefinite leave. I hope it’s a short one. He said he’ll try to come back in a few weeks. Anyway, Junior came with us to the hospital to learn the ropes.

Another thing, I’m getting used to getting a needle stuck in my arm. During the first few infusions, I really couldn’t look at my arm when they stuck the needle in. I had to close my eyes every time and think of something else. This time though I was able to look at the procedure while it was being done. One thing I observed, the “thingy” they stick in your vein, at first I thought that the needle that they stuck in stayed there the whole time. I was wrong. The needle is attached to a plastic device that remains in the vein when it’s stuck. The needle to my relief is pulled out after. Imagine that… All this time I thought it was stuck in my arm. I wouldn’t move my arm because of fear that the needle might stick somewhere else… Now I’m relieved that it’s just plastic that bends quite easily. At least I know I can now move my arms better.

As for the rest, it’s same old, same old. I lie in bed, they stick the I.V. in, the infusion goes on for several hours, they take the I.V. out, I rest and they observe and finally a few hours after I get to go home. Oh, lunch is somewhere there in between.

Not very exciting but like I said before… That’s the way I like it.

Fight Pompe!

Changing Aides

One thing I really hate about having an advanced case of Pompe Disease is my reliance on other people for daily living. One thing I hate more than that is having to change aides.

In about a week or so I’ll be changing aides. Mike who’s been with me for almost two years will be going to the province. I’m not sure if he’ll be there permanently. He said he has plans on coming back but as with all things in life, nothing is certain except death and taxes.

I’m used to Mike already and he’s done a good job so it really sucks to have to change aides. It’s something he needs to do. I don’t take it against him, in fact I’m grateful for the 2 years of service. I wish him well on his journey. I’d be glad to have him back but that’s something that the only time can tell.

For the time being, it seems that his brother will be the one to replace him. Although that is still up in the air due to certain factors. I hope I can sort this out soon.

Fight Pompe Featured In 2 Web Sites

It’s been a good past few weeks for Fight Pompe. This blog got featured in two web sites recently.

The first one is a “b5media”:http://www.b5media.com blog called “Genetics and Health”:http://www.geneticsandhealth.com/2006/04/16/pompe-disease-and-featured-blog-of-the-week-fight-pompe/ written by “Dr. Hsien-Hsien Lei”:http://www.b5media.com/hsien-hsien-lei/. Dr. Lei made Fight Pompe a featured blog of the week. Please go visit Genetics and Health. It’s a good resource written by a knowlegeble author.

The second site that feature Fight Pompe is “The PharmVoice”:http://www.thepharmvoice.com/2006/04/genzyme_corps_myozyme_first_pr.html also written by a “b5media”http://www.b5media.com blogger “Gloria Gamat”:http://www.b5media.com/110/. It’s a site that discusses Pharmaceutical industry related news and information. Please go visit this site as well as I’m sure you’ll find it interesting.

Thanks to these two sites for helping spread the word.

The After Mac

!/images/16.png!

A few weeks ago I got a message from a friend, “Jayvee”:http://www.abuggedlife.com who also happens to be a blogger for “b5media”:http://www.b5media.com. He asked me if I was interested in helping him out with one of his blogs called “The After Mac”:http://www.theaftermac.com.

I’ve slowly started my “writing career” last year. If you can call it that. Starting with articles on a local magazine “MPH”:http://blog.m-ph.com. Writing is something that I’m now starting to like. I’ve written a few articles here and there the past few years but nothing regular up till the magazine and now the blogs.

I’m really happy to be onboard with “The After Mac”:http://www.theaftermac.com. It combines two things that I like, no love. Apple Computers and writing. So please, please for the love of God please vist the blog.

Happy Easter!

I want to wish everyone a Happy Easter. This is a day of renewal. The day that Jesus Christ rose from the dead to fulfill a promise. To complete our redemption from sins. He died for us and now he rises for us.

This Easter is a special one for me. I got to spend time with my family, almost all of them including my aunt and uncle from California. What really makes it special is because this is my first Easter on Myozyme.

The treatment has given me a renewed sense of hope. A rebirth of sorts. As much I was hopeful before I am moreso now. It’s with great happiness that I now look forward to the days ahead. With Myozyme I am now more optimistic that my quality of life will improve. I hope it does so.

A friend sent me this message via SMS. I’d like to share it with you because it’s a great one.

bq. Today is God’s way of saying, “one more time..!” live life, make a difference, touch one heart, encourage one mind and inspire one soul. A blessed, happy & meaningful EASTER to you n your family! Ü

Fight Pompe Around the World

I’m starting a new thing here at Fight Pompe. Since launching the “Fight Pompe Store”:http://www.cafepress.com/fightpompe/ several months ago, I’ve sold several shirts already. Many thanks to all those who bought shirts. I sincerely appreciate it.

In order to create more awareness and just to see where Fight Pompe shirts have been I’m making a call to those who’ve bought them to send me pics of you or someone wearing the shirts with the general location of where the pic was taken. With your permission I’d like to post them here just so people can see where the Fight Pompe campaign has been.

As a firm believer in leading by example I’ll go first. Below is a picture of me wearing a Fight Pompe T-shirt inside the hospital room during my 9th infusion. Pardon the picture, I forgot the digital camera at home and had to make do with the built-in camera of my mobile phone.

Man! I gotta put on some weight!!!! I look so thin in the picture… But trust me, I look better now than I was a few months ago. Still, I got a long way to go…

So c’mon send me yours. You can email it at juanbkm at gmail dot com.

9th Infusion

April 11th marked my 9th infusion of Myozyme. Things weren’t the same as it should have been. My regular nurse couldn’t make it so a substitute took over. The lead doctor could not be there at the start of the infusion since she had a meeting with the board members of the soon to be formed Philippine Society for Orphan Disorders. More about the society in a future post.

Now while things started a bit shaky and not with the routine that I’m used to, the day eventually turned out ok. The infusion went ok as a whole. We finished a little later than anticipated but not by much.

The highlight of my day was the visit of my Uncle Jonee, Aunt Puri and Grandmother or “Lola” which is the local term for Grandmother. My uncle and aunt live in california and are in town for a vacation. I was touched that they took the time out of their short stay here to visit me at the hospital.

It’s special as well because I got to share at least part of the experience with people that mean a lot to me and who have a done a lot for me as well. My uncle and aunt have been there to support me all these years. Every time we had a chance to go to the U.S. they would take us in their home and welcome us with open arms. They’ve also helped us in the past to look for possible doctors, treatments and the like. I’m really glad to have them share the experience with me. They mean a lot to me.

Other than that everything else is pretty much boring and uneventful. Every time that an infusion goes this way I am thankful. Uneventful is good.

Fight Pompe!