Category: News

The Livermore Wine Stomp Half Marathon last Sunday saw a Juan participate in it. No not this Juan, but another great Juan. My uncle Juan (it’s a tradition for my family to name all their first born Juan, I’m actually the 4th Juan) joined the said half marathon. Now this is news or blog worthy for several reasons.

1. *A marathon or half marathon is no piece of cake* – Anyone who finishes a half marathon should be proud of himself/herself regardless of age. Heck I don’t think I ever walked an entire marathon the whole of my life. Even when I was walking normally.

2. *My uncle is 60* – Most people couldn’t run a marathon during their prime years, much less when you’re 60. But, yep my uncle did.

3. *He dedicated the marathon to me* – This arguably is the single best reason for me to blog about this. I was really really touched and honored that my uncle dedicated the run to me. He wrote me an email about a month and half ago, saying that he was going to run the marathon and was dedicating it to me. I was honestly speechless. He’s always been a great uncle. He, together with my aunt, welcomed us to their home when we made the trip to the U.S. several times both for a vacation and for medical reasons. Apart from that he has always been there for me and my family in one way or the other.

This gesture just really proves how great a guy he really is.

The Livermore Wine Stomp is a 13.1 mile or 21 km run. My uncle did it in 2 hours and 29 minutes. Around 19 minutes of his targetted time of 2 hours and 10 mins or about 10 minutes per mile. He was on track to finish in that time but a little over a mile from the finish line he got cramps on his right leg and then the left foot. He ended up having to walk the last mile to the finish line.

The time he put in is still under the max time he targetted for which is 2 hours and 30 mins.

My uncle wore a shirt with my picture printed on it as a symbol that he ran it for me or he was running it with me.

Tito Jonee (Tito is uncle in Filipino), from the bottom of my heart I thank you for this great gesture. This is truly one of the greatest things anyone has done for me. I will always remember this.

Well another earthquake just hit at around 1:30 this morning. Seemed a bit stronger and longer… I’ll write about it more when I wake up tom. Too sleepy…. Zzzzzz…..

I’ve had a headache for the most part of the day today. So when I felt dizzy I thought it was just a result of my headache. “Earthquake” my brother said. He was sitting beside me. I looked up at the ceiling and noticed the chandelier swaying. It was rocking back and forth. Swaying side to side then in sort of a circular motion. It was an earthquake indeed.

The earth beneath us rocked at about 10:20 to !0:30 p.m. I didn’t get to check the exact time. I was still in shock. My heart was still pounding.

An earthquake scares me for the same reason ghosts scare me. It’s because I can’t run. If something happens I’m stuck here, helpless where I sit. That’s why I’m scared. If I could run, I probably won’t be as scared. It also doesn’t help that we live on the 24th floor. I’ve loved the place where we live. It’s small but nice and in a good location in the city. But after several earthquakes.. I think it’s about time to live somewhere closer to the ground. It’s just that.. I don’t think we can move anytime soon.. Oh well such is life.

Still no word from the local news web sites and TV. I’ll post links as soon as I see them.

Still.. I thank God we’re safe. I hope you are too.

*Update*

So apparently it was a 5.2 magnitude earthquake that hit Central Philippines. It hit at 10:30 p.m. and the epicenter was somewhere 35 kilometers south of Boac, Marinduque. Manila (where I live) felt an intensity 4 earthquake. But at 24 floors up in the air it felt more than that.

Read about it “here”:http://newsinfo.inq7.net/breakingnews/metroregions/view_article.php?article_id=27849

There’s something I’ve been wanting to do since a few years back. This something means a lot to me. I’m really happy that one of my friends graciously agreed to help bring this dream to life. Today marked our countdown to see if this dream will come true. I’m hoping it does. My friend dropped off our entry to a writing contest yesterday morning and now the countdown begins.

There are several reasons why this is one of my dreams. Reasons that I’ll reveal here when we’ve heard from the judges of the contest. I wouldn’t want to preempt things. Suffice to say, I really, really, really hope we do well in the contest. Please pray for us. We should know the results before mid November.

I got an invitation early this week to attend an art exhibit opening. My ninang (god mother) is having a one-woman exhibit featuring her water color art works. It’s at the Gallery Joaquin about 10 mins from where I live.

The invitation had a note which said that she was inviting me to be one of her special guests. From what my mom said, I just thought that special guest meant that because I was one of her god child that she just wanted all her god children to be there. I thought nothing big of it. So I went with my mom and dad.

To my surprise when I got there, she said that I together with the other sons of her close friends would be the one to cut the ribbon to open the exhibit. Imagine my surprise!

So it was really a good thing that I went, and went almost on time for that matter. I was privileged enough to be asked to cut the ribbon.

The exhibit went well. It showcased her water color artwork composed of a flower series as well as a Koi series. Seeing the artworks and being able to support her was a great motivation to go. A big plus was being entertained by a nice band called Rockin Revival accompanied by an extremely gifted young violinist. I think her name is Gail Ramos. If I’m not mistaken.

She must have been 13 or so.. She couldn’t have been older than 16. Yet she played with a mastery beyond her age. Being good at the violin is great already but she also played the flute. She was equally good at it as well.

A night filled with good artwork, good music and friends. How can you go wrong with that?

I got “featured”:http://www.philstar.com/philstar/NEWS200610021703.htm again on a local newspaper here in Manila. “Bernadette Sembrano”:http://www.bernadettesembrano.com/ wrote an article last Monday featuring me and “PSOD”:http://www.psod.org.ph. It was a nice article. I thank Bernadette for doing the piece. Not becaus e I got featured again but because PSOD got featured. Any publicity for PSOD is welcome.

To all those who left comments on my blog after reading the article, many thanks. I always appreciate hearing from you guys.

I was lucky enough today to have had the chance to participate in the “AMDA”:http://www.amda-pompe.org Teleconference. The AMDA sponsors teleconference from time to time. Tackling various topics such as nutrition, exercise, gene therapy, insurance, respiratory complications and a lot more. Today’s topic was an open forum among patients.

I’ve wanted to participate in the “teleconference”:http://www.amda-pompe.org/communication.htm for a long time. However, living in the Philippines it meant that I had to make an overseas call. The usual time for a teleconference is about an hour. That would mean a lot of money. So I held off participating.

Oh but the wonders of technology has made it possible for me to participate today. I borrowed my friend’s VOIP phone. A VOIP phone allows you to make a call through the internet as opposed to the traditional phone line. My friend got a plan with unlimited minutes. All you need is a broadband connection and you just plug in the VOIP phone and there you go. Instant U.S. number. You can call any number in the U.S. and they can call you as well. You get a U.S. number with your VOIP phone.

The patient open forum proved to be a wonderful experience. Up until today I’ve only known patients through the GSDnet, an online mailing list for Pompe and other Glycogen Storage diseases. For the first time I heard the voices of other Pompe patients, family members and/or care givers. I’m happy to have finally heard and talked to Tiffany. We’ve been chatting for quite some time now but it’s the first time we’ve spoken to each other. I jokingly told her that it was nice to hear her distinct Texas accent. “Hey Ya’ll” or something like that.

A wide range of topics and concerns were discussed. From Bi-pap machines, respiratory concerns, Myozyme experiences, etc.. It was truly nice to hear other patient experiences. No matter how much people read, research about Pompe it’s still different hearing experiences from other people who are going through what you’re going through. There’s a kinship that is formed.

So to Tiffany, Marsha, Brian, Alicia, Ron and the other patients (sorry I couldn’t remember all the names, blame it on poor memory) it was great talking to you guys and sharing stories with you. I look forward to meeting all of you in person one day.

!/images/24.jpg (The Cure)!

Pulitzer Prize winning author Geeta Anand has written a “book”:http://www.amazon.com/Cure-Million-Medical-Establishment-In-Children/dp/0060734396/sr=1-1/qid=1157564796/ref=pd_bbs_1/102-4964348-3303324?ie=UTF8&s=books about a father’s struggle to find a “cure” for his two children with Pompe.

“The Cure” is the story of John Crowley, father of Megan and Patrick, two siblings afflicted with Pompe’s disease. Upon learning that both children had Pompe’s disease, John quit his well paying job to start a company dedicated to finding a treatment for Pompe. From a using his personal finances to raising venture capital, John was able to raise 27 million dollars to fund the companies’s search for a cure. In late 2001, the company was sold to Genzyme for a record 137.5 million dollars.

I’ve personally met John, his wife Aileen and Megan during my visit to the companies then headquarters in Princeton, New Jersey. My impression is that they’re nice people. But it was a short visit so I really can’t say for certain.

The story has come under some criticism in some circles of the Pompe community. There are things about the story that didn’t sit well with them. I’ve heard some opinions but will reserve in making my own since I haven’t read the book.

I’ve placed an order for the book and awaiting it’s delivery from Amazon. Once I get a chance to read the book, I’ll let you know what I think.

Hooray! I got my copy of the “Expression of Hope”:http://www.expressionofhope.com book. What is “Expression of Hope”:http://www.expressionofhope.com? Good question. I took the liberty of lifting the description of it from the web site.

bq. Expression of Hope is a global program of goodwill and awareness featuring works of art by the community touched by the rare genetic conditions of lysosomal storage disorders. Selected artwork will be displayed at various events around the world where others in the community can view it. In addition, the majority of submissions will be posted on the web where they’ll be accessible to the broader community. The works of art are meant to express the subject’s feelings of hope and be an expression of the human spirit of the person living with an LSD.

About 6 months ago I was asked if I wanted to participate in the “Expression of Hope”:http://www.expressionofhope.com program. Naturally I said yes. I was assigned to collaborate with an artist from Boston. So I met “Sean Ackley”:http://www.seantackley.com/ through a conference call organized by Genzyme. We spoke for awhile and got each other’s contact information. We exchanged emails, chats in the days that followed. Sean and I were able to exchange ideas which he eventually used to develop the artwork he submitted. You can view the artwork “here”:http://www.expressionofhope.com/gallery/eoh_gallery_main.asp?featured=&submission_type=Collaborative%20Work it’s the photograph with the diary and pictures.

Sean took my words and wrote it in a diary. He then photographed the diary together with some pictures of mine. The result is the fantastic artwork he created. Ok, ok.. I’m a bit biased. But it’s honestly good, biases aside.

The “Expression of Hope”:http://www.expressionofhope.com is a great program that is trying to help create awareness for people with LSD but with a positive twist. It showcases the talents and the positive attitude of people suffering from LSDs. It’s a fantastic campaign and I hope that it does well.

The Fight Pompe illustration I also had May Ann commissioned is featured in the web site of “Expression of Hope”:http://www.expressionofhope.com. So please do check out the web site, you can send e-cards of the artworks from the web site.

Let me know what you think.

Well thanks to “Nina”:http://ninascoops.blogspot.com again, I’ll be featured on Pipol. To be honest, I don’t really like attention but this is for creating awareness for Pompe so I wanted to do it.

It’s really important to create awareness. Especially for such a rare disease. If you get to watch it tonight, thanks. If not, try to catch the replay. It will be aired on ANC. Saturday or Sunday I think.