Farewell To Our Fallen Hero

I woke up to the sad news that Sec. Robredo’s body was found inside the plane. I’m deeply saddened about the demise of a man I have not met but only know through reputation. That does not diminish from the fact that the Philippines lost a great man. It’s also a sad coincidence that his body was found during the death anniversary of another great Filipino.

We will only truly lose Sec. Robredo if we do not take up his cause and follow his example. A true servant leader, he embodies what a great Filipino public servant should be.

Paraphrasing from Tony Meloto “When a hero falls from the sky, many others will learn to fly” A true Filipino hero fell from the sky. Let it be our duty to learn to fly and soar to the heights that Sec. Robredo dared to glide.

God speed Sec. Jesse. You will be missed not only by your family but by the entire Filipino nation. Take heart that a whole nation is in tears because of your early demise. It means you are loved and cherished. In the world of politics very few people have the same respect we have for you. Look after the nation from heaven. We will see you again some day. Dios Mabalos!

ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease

This November I’ll be 35 years old. That would be 5 years more than what I initially thought I’d live to. When I was 10 I started showing symptoms of what would be Pompe Disease. Of course at that time we didn’t know what it was called. It would take several doctors and 6 years to eventually find out what I was sick of.

I’m not here to talk about Pompe Disease specifically. If you want to know more about it you can head on here to read about it. Please finish this first though.

In my 35 years of living, 25 of which were spent battling a dreaded disease I learned a lot of things. Lessons that I know have made me a much better person. Lessons that I know will help other people as well. That is the main purpose why I wrote this article.

Continue reading “ThisAbility: 10 Life Lessons I Learned Growing Up With Pompe Disease”

To Dad On Father’s Day

There’s one thing I never joke about. I never joke about wanting any other parents other than the ones I have. My Dad and Mom are two of the best people I know. I believe that God puts people in your life for a reason. He knew that without my parents I can’t survive the challenges I’m going through.

I wrote about my mom last Mother’s Day so it’s Dad’s turn today.

It’s hard to put down into words how much I love and appreciate my dad. I don’t think I’m that good of a writer to do him justice. Since it’s Father’s Day though I thought I’d try at least.

Continue reading “To Dad On Father’s Day”

Stumbling Blocks To Stepping Stones

Life is about choices. We’re put in situations and given things but it’s up to us to choose what we do with it. I’ve said this before during the several times I’ve been asked to do motivational talks. Life is like poker. It’s not always the best hand that wins. It’s who plays their cards right that often end up winning.

I was born with a rare genetic disease that has robbed me of a lot of physical abilities. I was fortunate enough to have been brought up with a positive disposition. I could use my sickness as a stumbling block or a stepping-stone to something great.

Some people tend to dwell on the negative things of a situation. In my case some people in my situation would tend to think about not being able to walk, or do things on their own. I admit I think about those things. I don’t dwell on them though. So I can’t walk or do most things on my own. Tough. No matter how much I cry over it though it won’t change anything.

Continue reading “Stumbling Blocks To Stepping Stones”

Choose To Live

In life we always have a choice. For Avery Canahuati and her family the choice was simple, they chose to live.

Avery was diagnosed with an extreme form of SMA of Spinal Muscular Atrophy. It’s a rare genetic disease that robs the person of his abilities. From walking, moving all the way to breathing. In Avery’s case she was not expected to live past 18 months.

It’s hard for any parent to accept that their child will die so young. A parent should never have to bury their child. Yet given this dire situation, Mike and Laura Canahuati, Avery’s parents decided that they would choose to live rather than focus on Avery’s death. “Mike always told me that we’ve got all the time in the world to cry. We can cry, you know when she’s no longer here” Laura was quoted as saying during an interview by CNN.

Continue reading “Choose To Live”

It Starts From You

I saw this image on Facebook. It’s a picture of an old lady in a wheelchair who is playing with her shadow. She sees her shadow standing up and striking a pose. The image has a caption that says:

“How others see you is not important. How you see yourself means everything.”

I absolutely love the image and caption. I can honestly relate to it. Let me tell you why.

One of the things I value most was the way my parents brought me up. Early on when they found out I was going to have a severe disability; they made a decision not to treat me differently. They would make considerations, sure but they would not see me as someone who less worthy or capable as a normal person.

I never once heard my parents talk about me in a negative way. They always encouraged me to do the things I wanted to do. They never pushed though. They allowed me to find out things on my own and see what I can or can’t do.

They encouraged me to finish school even if I wasn’t motivated to do so because I just wanted to enjoy my time here on earth. I had been told I might not live past the age of thirty so I figured why waste it on doing something I didn’t like.

Turns out, I lived past thirty. I also benefitted greatly from the education I got.

Growing up I also surrounded myself with people who would encourage me. I hated people who would tell me I couldn’t do things. One of the sure fire ways of getting me to do something is telling me I couldn’t do it. Maybe I couldn’t but I would sure try.

All of these led to how I see myself today. I don’t look at myself as someone who can’t amount to anything because of the abilities I lack. Actually, most of the times I forget I am differently abled until I need someone’s help to do something. But even in that instance I don’t see myself less.

I see myself as a person who needs to do things differently but still every bit as worthy as the next person. I see myself as a productive member of society. I see myself as a peer to most people.

How the world sees us is dependent on how we see ourselves. If we believe in ourselves, if we think we are capable then the world will see us as such. Each person has a distinct beauty inside of him/her that is unique. Each one of us is special. Sometimes the world fails to see it because we fail to show it to the world.

If you want the world to believe in you, you need to believe in yourself first.

I Thirst

Last Good Friday, I got invited to participate in the “Seven Last Words” program that aired on ABS-CBN. I didn’t realize how much people were able to see that.

I was at mass yesterday when after the mass finished a lady approached me to tell me she saw me on T.V. during the program. It was nice to hear the kind words she said.

I’m posting the sharing I made for that program. It was for the fifth word “I thirst”.

Fifth Word: I Thirst

Despite being born with a very rare genetic disease called Pompe Disease, I consider myself blessed.

I come from a middle-class family. I was fortunate to have two wonderful and supportive parents, the best brother a person could ever want and now I also have a wonderful sister-in-law as a new addition to our family.

Throughout my 20 something years of battling this disease, my family has loved, supported and cared for me. I was able to finish school, get a job and be productive. I don’t think I could have asked them for anything more.

From my immediate family all the way to my extended family and friends, I’ve always felt loved and accepted. However as I grew older and got exposed to the world outside my family and friends I learned that the world or at least some parts of it is not as accepting.

I realized that I was different. My disease has caused great disability and that disability made it difficult for some people to accept me as their equal.

From the moment I step out of the door of our home, I venture into a world that does not automatically see me the way my family and friends do. There’s a stigma or a perception that is associated with someone in my situation.

I was taunted and teased as a kid. As I grew up the taunting and teasing lessened. However other things replaced it. Some people would look at me with pity. They think that just because I’m in a wheelchair and can barely move that I am a person who has very little worth. All they see is the disability and not the person inside.

One of the things I feel bad about is that sometimes when I am outside, whether it’s in the mall or just out side the place I live, some people would look at me and instead of talking to me ask the person I am with “uy, ano sakit niya? Kawawa naman”. They automatically assume that I am not able to converse with them or answer their questions in a rational way. But I can. I am probably the best person to ask about my condition. Also I think I am smart enough to answer their questions.

Sometimes society has certain stereotypes about people. People with severe disabilities should be looked down with pity.

I am proof that society shouldn’t.

Despite my challenges and with my family’s support and tremendous faith in God, I’ve grown up to be someone that I can be proud of. I’ve managed to finish school. I graduated from college. I am gainfully employed and contribute to society. I’ve done things that most people haven’t.

It took a lot of hard work but I managed to make something of myself. God showed me through the countless blessings he has bestowed upon me throughout, that he does not see me any differently from his other children. He loves me just the same.

Apart from my physical challenges, I am no different than most guys my age. I feel and want the same things most “normal” people do. I want to be a productive member of society. I want to be a good Christian. I want to love and be loved. I want to have a family someday. I want to make a difference in other people’s lives. I want to grow old and during my final moments in this world, say to myself that I have lived a life worth living.

I know that like other people we have all the things we want in life. I know that and accepted it as such. But like most people all I ask is the opportunity to try and pursue my dreams.

In a way some parts of society right now are like the soldiers who gave Christ sour and cheap wine as he yearned to satisfy his thirst while carrying the cross. Some parts of society treat people such as myself as those soldiers treated Christ, by offering them half-hearted gestures.

I look forward to the day wherein our society doesn’t look at a person such as myself and see his or her disability. Instead society looks at him or her and sees the person and what he or she truly is, a gift from God who deserves the same respect and love like everyone else.

I look forward to the day wherein society treats us like equals and offers us not cheap wine but the same wine as what they would have for themselves. Our lives are as valuable as anyone else. It might not be apparent from the surface but when look past the shortcomings you will see the true value that is in everyone.

Each person has a unique gift that is his alone. No two people are alike. Each one of us carries a beauty that is all our own.

I am not alone. There are countless people such as myself who either suffer from a disease or something else that changed their lives, people who walk this earth a little different from most. We all want to be accepted. We all thirst for love and empathy as you would give others. We ask not to be treated special but to be treated as equitably. We understand we are different in some aspects and need consideration for those things but for the most part, we are like every other person. We will continue to carry our cross, bu we thirst for your love.

Hooray for Hannah!

With the Cordoviz Family

I’ve always believed that children should always be happy and carefree. In a perfect world no child should be sick. However, we don’t live in a perfect world and it’s sad to see sick children. especially if the condition is so rare and life threatening.
Hannah is a 4 year old girl who suffers from a condition called Congenital Central Hypoventilation Syndrome or CCHS. This excerpt from the CCHS Network explains it best.

bq. CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired. A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours and absent to varying degrees during sleep, serious illness, and/or stress.

Hannah is the daughter of Carlo and Joan Cordoviz. I met Carlo almost 2 years ago through Facebook. He looked me up because I belong to a non-profit organization called the Philippine Society for Orphan Disorders, our non-profit aims to help people, especially children with rare diseases.

Carlo and I hit it off and we became friends. We had a common bond. A rare disease has touched both our lives. He had a daughter with a rare disease and I was suffering from one. We could understand what each one was going through.
As time went by our friendship became stronger and I got to know more about Hannah. Carlo would update me about her condition and I would also look at her pictures on Facebook.

About a week ago, I found out that Hannah was celebrating her 4th birthday. I asked Carlo’s wife Joan what their plans were. She said that they didn’t have any plans. Due to the enormous strain that Hannah’s condition puts on their finances they didn’t even have any extra left for a small birthday party or even a special gift for Hannah.

I felt really bad when I found out. I felt bad for several reasons. One like I said, children should always be happy. I don’t like it when I see children sad. Two, people like Carlo and Joan who work hard, love their child and try to be the best parents they can be don’t deserve this much hardship. I believe that people who work hard should be rewarded and deserve to have blessings thrown their way.
What I felt was not a sense of pity. I just felt that it was an injustice that good people can’t be happy on a special day in their lives.

It was barely six days away and it was not a lot of time. I didn’t have a lot of resources on my hands but I said to myself, I wasn’t going to let Hannah’s birthday pass by without doing something for her, for their family. It was unacceptable to do so. I also found out from Joan that Hannah liked learning stuff. She also was fond of her speech therapist’s iPod Touch.

I said to myself, Hannah deserves an iPad or at the very least an iPod Touch. I’m an Apple person. I love their technologies and from experience I know that the iPad and iPod Touch are both great learning tools that can be loaded with apps to help a 4 year old child who can’t speak because of her trache, communicate and also learn more with this tool.

It’s settled! Hannah will get an iPad or iPod Touch for her birthday. Oh wait! Damn! I have some expenses I needed to pay off. But I didn’t want that to curtail her gift.

In the middle of the night while browsing through FaceBook, I chanced upon my friend Charles who also happens to be my Apple supplier and is the owner of one of the country’s premier Authorized Apple stores. I asked Charles if he had any iPad’s in stock. He said he wasn’t sure as they really were hard to come by. The only model that would fit in my budget was a 16GB one.

Charles asked me why I needed an iPad. I told her about Hannah and her family’s story. He was so touched and moved by it that he thought for a minute and said. Look, I think I have a display unit of the iPad 1 left. They changed displays at the store because of the new models and they usually sell those display units off.

He told me that it was display unit but it was in very very good condition. Instead of selling it, Charles said, “it’s yours! Give it to Hannah.” I’ll even throw in a free case and screen protector. Have it picked up at the store.

I protested and told Charles that I would be happy to pay. He would have none of it. He simply said that he has been blessed so much and this is just a very small way of giving back. Ok, then. I can’t argue with that. I’ll take it!

Birthday gift, check! But wait! We can’t have a birthday without cake! The next day I promptly put in a call to my cousin “Peachy”:http://peachyjuban.com/ who happens to be one of the country’s top cake designers. I asked her, how much is a birthday cake? She asked me why I needed a birthday cake. My birthday wasn’t for months. I told her about Hannah. She said, “Ok, ok, you got me already. Hannah will get a cake on me.” Not much convincing needed there!

So now we have an iPad and a birthday cake. What else do we need? Oh shoot! I forgot. The iPad is only as strong or useful as the apps on it. Hannah needs some iTunes GCs to load stuff on her iPad.

This time, Twitter comes to the rescue. I sent out a tweet asking where I can get some iTunes GCs. Two friends reply. One of them only wants to be identified as “Tito Pogi”. He asked me why I needed it, I narrate Hannah’s story once again, he says I have an extra iTunes Gift Card here. It’s Hannah’s! I’ll it to you.

Another friend sends me a message. Ms. Chuvaness herself tells me I could get some from DataBlitz in Shangrila. But when she finds out why I needed to buy it, she said, I have an iTunes Gift Card here. Please give it to Hannah.

Hooray! I know have an iPad, iTunes GCs and a cake to bring to Hannah! I was so excited for it to be Sunday.

While I was putting this all together, I was also speaking to a friend who also knows and in fact very close to Carlo and Joan. Pam is also a mother to a special needs child with a rare disease. Pam and Joan had become close friends as well. I told Pam that we should go and visit the Cordoviz family and spend Hannah’s birthday with them. She agreed immediately and made arrangements on her end.

Having a special needs child is never easy. So I know it’s also a sacrifice for Pam to go to the Cordoviz’s house, especially on a Sunday. She made the sacrfice and even brought her daughter Julia, who suffers from Retts Syndrome and Janna, Julia’s younger sister.

Sunday came and I made the trip to Las Piñas. Before going to Hannah’s house though, I went to Shortcrust, Peachy’s shop to pick up a cake. It was such a beautiful cake with fondant frosting and sugar lollipops on top. There was also fondant lettering that spelled out Hannah’s name. It was a marvelous cake from one of Manila’s premier cake designers. It wasn’t just any ordinary cake.

I also passed by KFC to pick up food to bring. KFC is one of my comfort food and it’s not a party without KFC.

I arrived slight past 4 pm in the afternoon. Pam was already there. She brought some gifts and food too. Julia was watching TV and Janna was already upstairs playing with Hannah.

Carlo met us at the driveway. It’s been a long time since I’ve seen Carlo and his face showed the signs of weariness from a combination of working nights and still being up in the mornings to help care for his daughter. Despite that he had a smile on his face, happy to see a friend who he has not seen for a long time.

I could sense that seeing friends was definitely a treat for them. They don’t often get a chance to go out and socialize with people because of the round the clock care that Hannah needs. So every chance to see friends is a welcome one.

It was also the first time that I would be meeting Hannah and Joan in person. The time’s I’ve seen Carlo, it was always he who would drop by our house. Up till then, I have not had the chance to make a trip to their house. Mainly because it’s not really easy for me to travel plus a lot of things got in the way.

I was so excited to meet Joan and Hannah! When I got inside the house, Carlo told me that Hannah was still upstairs. She mostly stays in her room, where it’s clean and sterile. They try to keep Hannah away from germs because any little infection can lead to something serious for Hannah.

Hannah came down after awhile. I was so happy to finally meet her in person and even if she could not utter a word, she had her own sign language to communicate with people.

We presented Hannah with the gifts and birthday cake. Although she could not blow her birthday candle, it did not take away from the joy that she felt.

It's an iPad!

Hannah’s dada and mama, helped her open her gifts. The whole family was shocked when they opened the package and saw that it was an iPad! Extremely grateful for the blessing that came their way.

Carlo would narrate later on that he really wanted to give Hannah a used iPod Touch since he could not afford a new one. However Hannah’s birthday came and he still did not have the money to get one. So it was definitely a blessing to get an iPad.

Gifts were opened, food was eaten, stories were shared. In that small living room of a very hardworking and loving family, I was reminded once again that making people happy is a surefire way to make you happy as well. I wasn’t sure who was happier, Hannah and family or I.

I’ve been fortunate enough in life that even though I’ve had to battle a rare disease such as Pompe Disease, I’ve been blessed to have been born into a family with moderate resources. I grew up never lacking in love and happiness. I was able to celebrate birthdays when I was a kid, open lots of presents and share precious moments with my family.

Some people are not as lucky. Not for lack of trying but simply because life throws them challenges that would make most people crumble. Yet, there are people like Carlo, Joan and Hannah, who despite the hardships they face, forge on.

I admire Carlo for being the man that he is. He never abandoned his family despite the enormous challenge they are facing. Joan is equally admirable for being the loving and caring mother to Hannah and a wonderful partner to Carlo. Their family is a great example of how parents should care for their kids.

From the brief time I met Hannah that day, I could see that she’s a wonderful kid, happy, smart, active and sweet. She has been battling with a condition for years and yet her demeanor does not show any negativity at all. I guess deep down inside her, she knows that the people around her love her immensely.

As night came and it was time to go home. I left with a so much joy in my heart that at least on this day, I together with my friends, made a little girl and her family happy. That’s one of the greatest feelings on earth.

I didn’t write this to tell the world of what we did. I wrote this to share with you a story of a 4 year old girl and her family. They’re going through so much yet strive hard to persevere. They deserve to be happy. They deserve to have people do good things for them. They deserve to be blessed. I am writing this in hopes that I inspire people to find deserving people in their lives and do some good for them.

Special thanks go out to Charles Paw of “Digitalhub”:http://www.facebook.com/pages/Digital-Hub-Apple-Premium-Store-Philippines/153969503979, “Peachy Juban”:http://peachyjuban.com/ of “ShortCrust Cake Shop”:http://www.facebook.com/pages/Shortcrust-Cake-Shop-by-PEACHY-JUBAN/125411620449, Cecile Van Straten of the famous “chuvaness.com”:http://www.chuvaness.com blog , Tito Pogi, (who refuses to be named but you know who you are), Pam, Julia and Janna. Thank you for making Hannah’s birthday possible.

If you want to make Hannah happy, drop me a message and I’ll get you in touch with them. You can also visit “Hannah’s multiply site”:http://hannahysabelle.multiply.com/.

Getting by with a little help from my friends

People often ask me how I am able to cope with my disease and situation. One of the answers to that is found in the lyrics of a Beatles song “I get by with a little help from my friends”. The truth is, I don’t think I would be where I am today, which is alive and kicking, without help from my family and friends.

Over the years, family and friends have supported me with my fight against Pompe disease. Whether it’s moral support or help with whatever medical needs I have, my family and friends have been there all the way.

Every so often, when life tries to pull me down, friends have a way of pulling me out of the dumps.

The present is a good example. A few weeks back one of my breathing machine’s broke. I’ve been using a breathing machine 24/7 for the past 5 or so years due to my battle with Pompe disease. It’s just my luck that in a span of 1 year I’ve had 2 machines break down on me.

I’ve been using a BiPAP Synchrony S/T for the past 7 years. It’s served me well but this particular machine was not really designed for the kind of use I put it through. It was fine for me a few years back when I was only on partial ventilation but the past few years I’ve been on it 24/7. So I take my machine everywhere I go. Suffice to say time and wear took its toll on my machines.

It’s now time to replace my machines and unfortunately the newer models of the synchrony doesn’t feel as good as the old ones. For some reason I’ve had difficulty adapting to the newer models. I think the time has come that I need to move to the higher types of machines, which are ventilators. Unfortunately, these machines are expensive.

A few of my friends learned about my situation. They took it upon themselves to try and help a friend out.

One of my friends Charlie got the ball rolling. He opened a new restaurant at Eastwood called DW Café. He arranged to have a benefit dinner and invited members from PhilMUG, the Mac club we belong to. Dinner was free and people were not obligated to give anything, but any donations would be welcome to help offset the cost of my machine as well as help PSOD as well.

Vic, another friend of ours that also belonged to PhilMUG found out about what Charlie did. He also thought of doing something to help me out. He messaged me early last week. He told me that he was running his first ever marathon. This wasn’t a fun run thing. It was an honest to goodness marathon! 42km!

He said he wanted to make the run more meaningful. So he decided he wanted to run it for me. He posted it on his Facebook page asking his friends to pledge any amount for each kilometer he would finish. The response on his Facebook page was great. His gesture multiplied because another friend of ours was running the same marathon.

Roland another friend, took Vic’s cue and dedicated the run as well. He took it a step further and actually posted it on our Mac club. Asking people to help a fellow Mac addict out.

The response was so humbling. People, who I’ve only known through the online forums I participate in, pledged towards the cause. It was unbelievable.

Last Sunday, March 21, both Vic and Roland participated and completed (Yay for them!) the “Dream Marathon”. The marathon started at 2am.

Both of them finished the race in quite respectable times given that this was their first marathon. Vic and Roland powered through pain and injury to finish the marathon.

The gesture of my three friends was very special for me. How much money they raised was only second to the gesture they showed. They thought of their friend and his struggles to fight a disease that has robbed him of most of his physical abilities. They took it upon themselves to help ease the burden of dealing with such a difficult situation.

I am so humbled by their gesture. Words cannot express what I feel inside. It’s not about the money. It’s about the thought and support they showed. I feel humbled because I know that God, through my friends has blessed me once again. Of all the people in the world that could use help, God looked favorably upon me and sent me friends like them to help with my struggles.

I wish to thank Charlie, Vic, Roland for spearheading these fund raising activities. I also wish to thank, the PhilMUG community headed by Elbert, Johannes, Chito, and the other moderators of PhilMUG for supporting my three friends in their venture. I wish to thank all the PhilMUG members who in one way or another supported the events. Even if I do not know some of the members personally, they still went out of their way to help a person out. I am forever in your gratitude.

I know that God has blessed me through people like them. I will do my best to ensure that the blessing does not go to waste. I will find a way to pay it forward by continuing to help other people with rare disorders in the Philippines. I want to show my friends that their help did not go to waste and that it would give birth to other good deeds.

I’ve lived through a lot of hardships in my life because of my disease. But how can I even start to think of giving up when I have friends like them who continue to push me forward. I fight my disease not only for myself but for my friends and family who continue to cheer me on. I fight for them as much as I fight for myself. They believe in me and that makes me continue to believe in myself.

Tonight I go to bed knowing that whatever struggles tomorrow will bring, I’ll get by with a little help from my friends.

A Rare Experiment

Rare Diseases affect hundreds of thousands of people all over the world including their familes and people around them.

My family and I are part of the group of people who everyday battle constantly with a rare disease. I suffer from Pompe disease. Yet, despite the hardships we’ve been blessed and somehow was able to get by.

Not may people are as lucky. There are countless patients who have no access to treatment or simple medical diagnosis because they don’t have money or the means to get care. Apart from that, there’s little that’s being done to combat rare diseases.

In our country, there’s virtually no resources allotted to helping people who suffer from rare diseases.

My family and I, together with well meaning friends and partners have decided to make it our cause to raise awareness and look for ways to help people with rare diseases.

February 28 is Rare Disease Day. This year will be the fourth day that it will be celebrated. Spear headed by the EURORDIS and organized together with rare disease national alliances from various countries all over the world, Rare Disease Day’s goal is to create awareness for rare diseases as well as the millions of people that are affected by them.

The Philippines is celebrating not only Rare Disease Day but the 2nd National Rare Disease Week. The last week of February has been proclaimed through Presidential Proclamation 1989 as National Rare Disease Week.

The Philippine Society for Orphan Disorders which I am a patient advocate for is trying our best to create as much awareness and buzz for Rare Disease Week. Due to our limited resources we can’t afford big publicity or marketing campaigns to promote Rare Disease week. So I thought of doing an experiment.

I want to see if I, together with your (whomever reads this) help can use the power of the internet and social media to reach Steve Nash.

Steve Nash in the past has shown support for his friend Simon Bell. Simon suffers from Hunter Syndrome or MPS II, a rare disease. From what I know and have heard, Steve Nash is quite a nice guy. I want to get a message to him and ask him, if he can just record or give a message of support for people, especially children who are suffering from Rare Diseases here in the Philippines. I know that this simple message from Steve will generate a lot of buzz here in the Philippines and create the much needed awareness for Rare Diseases.

So please help me, get this message across. If you have Twitter, please post a link to this post in hopes that it will eventually reach Steve Nash. You can also tweet him at @SteveNash and hopefully he’ll see this post. If you have Facebook, please post this on your status or wall as well.

This might seem crazy but hey, we’ll never know until we try. If it reaches him and we get a message out of it then fantastic. If not, then I haven’t lost anything. In fact every person that reads this is one more person that knows more about Rare Diseases. That’s a victory already.

If you want to help people in the Philippines who have Rare Diseases please visit our web site at “www.psod.org.ph”:http://www.psod.org.ph or send me an email at juan (at) psod (dot) org (dot) ph. There are various ways you can help. We have a petition going on to ask our law makers to pass the Rare Disease bill, you can make a donation towards the Endowment Fund we’re setting up to help support the treatments and medical needs of patients with Rare Diseases. A whole lot of things.

So please, please, please, help me with my experiment. Please pass this on to others.

Remember Feb 21-28 is the 2nd National Rare Disease Week here in the Philippines and February 28 is the international Rare Disease Day. Check it out at “www.rarediseaseday.org”:http://www.rarediseaseday.org.

Let’s do this!