Singapore Scientific Programme Schedule

Dont worry guys'

Andy , manal  are already on their way.

I am here, will try to see how best we can manage.

We can talk to the doctors indiviually if all the other resorts fail. Lets hope for the best.

Aysam - this is Puja here u can call me once u land in S'pore. I am sending you a personal message with my contact details.

When the scientific sessions were planned for, parents and patients could attend ALL sessions as like in previous conferences. It was only later when we checked with our Health Science Authority, the regulations are that only medically trained people could enter the medical sessions. The rationale for this ruling is because these people are medically trained and would have the medical knowledge to make an informed decision.

After this regulation was made known to us, we had to change the program and invoices. As a result, those who had registered before the change had invoices that mentioned that they are entitled to enter all scientific sessions. However, knowing that banning parents and patients from the medical segment will incur a lot of wrath (like now) we have persuaded our scientific committee to agree to open certain sessions that we think will benefit the parents, patients and supports. Plenary 3, 6, Symposium 6, 7, 12, 13, 14 are open for all participants. So we are trying our best to pacify everyone here.

All these while, because these thal conferences are held so far away, people in asia have no opportunity to attend the conferences. Now that the conference is in asia after so long, we are obligated to tend to the needs of the people here and that is the objective of the conference. Andy, Isis, Asyam, Manal and the rest of you in this forum have the privilege of having easy access to the education of thalassaemia. You were privileged to be able to attend conferences on thalassaemia. Do you know that there are some parts in Asia where people cant even get blood? They don't even know the basic knowledge of what thalassaemia is all about! They are wondering why their children are dying slowly! They don't give a damn about molecular whatever and gene whatever! They want to stop their loved ones from dying and they want to know how!

We are not out to cheat you, we are not out to get you! For every parent and patient and supporter that signs up, we have to PAY to subsidise for your cost. That's not cheating! How do we cheat if we are making a loss? As an organiser and a patient myself, whenever I make a decision, I ask myself if this was the best for the participants so much so that I get into arguments with my co-organisers. This conference if not for the parents and patients, then what is it for?? But rules are rules. I'm not saying that I'm happy with it, but what can you do? Rules are there for a reason - to protect the people. This particular rule of not allowing lay people into medical sessions is applicable in many other countries as well like Europe and USA. In Singapore, there have been many incidences and accidents recently involving medications and lay people not making an informed choice therefore, these rules are enforced and reinforced. Singapore is what it is today because of the government. It just doesn’t do anyone any good to break the rules.

In a matter of about 20 years Singapore has gone from a developing country to a developed country. This is no mean feat and we have our government to thank and being"one of the most restrictive societies on earth". It may seem ridiculous to you - the banning of chewing gum. But Singapore is known for its cleanliness and greenness. We would not have reached that stage if not for chewing gum. What benefits of any kind are there to chewing gum anyway? It's not like chewing gum will caused you to be healthier or improve the economy. Singapore is has been voted one of the safest cities to live in. I can walk along the streets late at night or wee hours in the morning without my parents nor me worrying about a being mugged, raped, having a drug peddler coming up to me or being shot in the head or getting blown up for no reason. How and why do you think we come to that? Yes, by " being a very restrictive country".  In my opinion, it is such narrow mindedness to judge a country like the way you are doing before you even stepped foot into it. You are condemning a place in which you have never been to and are about to enter.     

But comeon' I've attended thal conferences too. Seriously, the point of attending such a conference is not exactly really to gain more knowledge especially since most of us are already quite knowledgeable in this area. It is the contacts and friends that we know that makes this conference. What the hell are we going to do with  knowledge of molecular therapies, heterogeneity and pre implantation diagnosis - if we even understand what is going on. To be fair Andy, even you said that there is only so much you can take.

I have been working my ass off for this conference. Juggling with my transfusions, chelation, my professional work and taking on this conference which basically is another full time job. I have been working round the clock for the past few months sleeping on the average of 5 hours and not having proper meals. The last few days for me was just conference, conference, conference from the time I wake up till the time I fall asleep. Friends see me and tell me that I'm crazy doing all this for nothing. I have to constantly remind myself that I'm doing this for the greater good of thal and the people that will benefit from it so it came to me as a shock when I read of such slanderous things written about it. I take personal offence when such things are said about the "organisers" because there is basically only 2 of us!! Only in the past couple  months, 3 of us running the conference. Yes, 3 people with their own full time jobs, running a conference for more than 1000 delegates. When you wrote to me Andy and Manal, it was in the heat of preparing for the conference. Like it or not, the conference had to go on and I'm sorry, those were more urgent stuff that I had to tend to. Also, I needed time to find out what was going on and to find a solution before I could adequately reply to you and that is why I could not respond immediately. Would you rather me respond "I don't know and am to busy to bother about this right now"?

I've been trying to accommodate to everyone's request. Andy you remind me to cater for vegetarians cos you are one and I took pains to ensure that there are vegetarian food! I know we can’t please everyone and am prepared for complaints, but nothing can prepare me for "boycott"? " trying to get rich quick from the vulnerables"? "deception"? "Scam"? " getting arrested"? I'm beginning to think that I am one that is all said. It is very disappointing that there are so much speculations without facts.

My question is, why condemn a conference before you even had a chance to experience it for yourself?

To eponine.
I don't know who you are and I don't care much.


Free speech is my democratic right I am entittled to say what I feel .it might not be what you want to hear/
I listen or read  a lot of shit from others,and i deal with it or accept because I respect the other human being point of view, because I know that the other person has the same right as me.

I'm an adult and I don't put up with your shit or anybody for that matter.

Kathy

Kymn

We are really thankful to you for all the preperations and I know how hard you have worked on this. Please dont take this to heart. We are all very happy to meet each other and i am sure it will be a success. Also I am sure we will be meeting all the Doctors and we can talk to them persoanlly. Please cheer up.

Thanks for trying and getting us into Plenary 3, 6, Symposium 6, 7, 12, 13, 14.


Can atleast a couple of us attend the following, may be we can take turns and divide the topics:

symposium 1 - molecular therapies

symposium4- immune status of chronically transfused, overview of infections in thalassemia.(very important to many of us, specially shilpa), management of asplenic patients(important for me).

plenary 4 - growth and  thalassemia , hormone replacement therapy, endocrine complications - very very important for our growing kids(manal,  and me).
The burdern of osteporosis - important to all of us

symposium : Liver disease in thal : critical again to manal, me and mariam(aysam)

plenary 5: emerging infections in blood transfusions and advance s in blood transfusion therapy - again important to all patients.

symposium 11- Thromboembotic complicatins in thal intermedia, cardiac abnoramlities in thal intermedia - very critical for manal and me.

Symposium 15 and 16 -  we can miss, this is what i feel, i dunno abt the other members.

Please see wht can be done.

Thanks for everything, I really appreciate your help from the bottom of my heart and here i am saying it from my side as well as out thal pals.

Kymn,

Like Puja said, we are all very thankful for the preparations the three of you organisers put into making the conference happen. In two days we will be witnessing your hard work and dedication to make the conference a success.

And we all appreciate it extremely that you guys have worked hard enough to get us access to those symposiums and plenary.

From your post, I know that you are deeply affected by the attacks that are aimed towards the conference and singapore. I have been lucky to be able to visit singapore on many occassions and everything you said about Singapore is true, from it being the most safest to most cleanest and very well developed. You have every reason to be proud.. However,  you must understand that we all were very excited to go there and this excitment was damped right into frustrations when we learnt about the law and that we could not attend the medical presentations.

quote from you: " All these while, because these thal conferences are held so far away, people in asia have no opportunity to attend the conferences. Now that the conference is in asia after so long, we are obligated to tend to the needs of the people here and that is the objective of the conference. Andy, Isis, Asyam, Manal and the rest of you in this forum have the privilege of having easy access to the education of thalassaemia. You were privileged to be able to attend conferences on thalassaemia. Do you know that there are some parts in Asia where people cant even get blood? They don't even know the basic knowledge of what thalassaemia is all about! They are wondering why their children are dying slowly! They don't give a damn about molecular whatever and gene whatever! They want to stop their loved ones from dying and they want to know how!"

I too was very very excited the conference is in Asia, specially withing reach in Singapore and you are right about the conference needing to tend to people who dont even know what is going on in Thalassemia. Maybe they wont care about moleculars and gene therapies. This is exactly my point, this is the reason why all the papers should be made avaliable so that we are able to choose which ones we want to attend. Those who know and want to know more can attend the medical sessions while those who are still learning the basics can join the non-medical sessions. Again, all am saying here is give the chance to choose.

Quote from Kymn, "But comeon' I've attended thal conferences too. Seriously, the point of attending such a conference is not exactly really to gain more knowledge especially since most of us are already quite knowledgeable in this area. It is the contacts and friends that we know that makes this conference. What the hell are we going to do with  knowledge of molecular therapies, heterogeneity and pre implantation diagnosis - if we even understand what is going on"

This is not entirely true Kymn. True, we would make invaluable contacts and maybe great friends with others.... And with the knowledge, there are people waiting back home at our own organisations, associations (im sure in many organisations in a lots of countries), hungry for any new information from us who attends the conference because they have the means of making something useful happen, not only for thier children but for the rest as well..

Quote from Kymn "I have been working my ass off for this conference. Juggling with my transfusions, chelation, my professional work and taking on this conference which basically is another full time job. I have been working round the clock for the past few months sleeping on the average of 5 hours and not having proper meals. The last few days for me was just conference, conference, conference from the time I wake up till the time I fall asleep. Friends see me and tell me that I'm crazy doing all this for nothing. I have to constantly remind myself that I'm doing this for the greater good of thal and the people that will benefit from it so it came to me as a shock when I read of such slanderous things written about it. I take personal offence when such things are said about the "organisers" because there is basically only 2 of us!! Only in the past couple  months, 3 of us running the conference. Yes, 3 people with their own full time jobs, running a conference for more than 1000 delegates. When you wrote to me Andy and Manal, it was in the heat of preparing for the conference. Like it or not, the conference had to go on and I'm sorry, those were more urgent stuff that I had to tend to. Also, I needed time to find out what was going on and to find a solution before I could adequately reply to you and that is why I could not respond immediately. Would you rather me respond "I don't know and am to busy to bother about this right now"?"


Finally kymn, thank you once again.. we all appreciate all the effort and time the three of you put in this to make it a reality. I understand how hard organising something like a workshop or a conference can be.. Though not on such a large scale, I have been on the organising committee on smaller scales. However, please understand that when we all vented our frustrations of the conference it wasnt personally at you, but at the system who might take what was promised to be a wonderful experience away from us..

I was very disappointed because i wouldnt be able to attend some papers im specially have been looking forward to since I knew about this conference from last year. (I dont think i still can.. its not under the symposiums u mentioned  ). And also for not letting us know about this sooner. Finding about it the last minute made every one react that way. And had we been informed of this earlier, maybe instead of the comments and feeling cheated we would have had more time and clearer heads to make suggesttions as to how it could be overcome.. All the intelligent brains in this forum could have suggested smething useful am sure.. This is all my opinion and what i feel...

Thank you for trying ure best to figure out a solution and making it possible to sit in a lot of the papers such as 6 7 11 14 15 16... etc... I appreciate it all..

Tc.

btw, i couldnt quote u, that why all the blue quotes 

Dear friends and valuable members of this site,

This site is all about you - and all of you.  We all express our feelings here and sometimes our thoughts conflict - mostly because of misunderstandings and heightened emotions.  We have all been through a lot lately, and many of our feelings are bruised to begin with. 

Eponine, after reading your message I finally see your side of the story - and I understand your position.  Thank you kindly for taking the time to explain.  Please also try to understand the feelings of our members who put their lives on hold and paid great expenses to attend - their words came out of anger and shock when they realized that they may not be able to attend the lectures - which may have been the determining factor for them to attend.  Yes, you are right the other aspects of the conference are important too - but for some people the main deciding reason was gaining attendance to certain lectures.  This miscommunication led to their angry feelings and obvious display of anger.   I am sorry for any hurt feelings on either side. 

As for the rest of our members - this site is for you - to help you and to help others.  Each and everyone of you plays a very very special role here and although we can - I hope we won't walk away from our cause here.  If there are differences we need to discuss them.   We all care for each other and have supported each other through so much.  I cannot walk away from all of you - and from Andy. 

My son is thriving today because of advice that I have received on this site.  Andy's research and advice has changed my life and countless other lives.  I will do whatever I can, however I can to be loyal to him and for the best interest of our members.  I hope you all feel the same way.  If you have questions please feel free to PM me - I am happy to discuss anything with you - you are the reason that Andy does what he does - that is why he has spent thousands of dollars and is on a different continent than his family at this time. 

Our great minds like Andy, Manal, Puja and every other member who is in attendance needs us to support their efforts while they are there.  Our posts need to support their efforts while they are there.  What good is our freedom of speech if it deters their efforts and 'wastes' their large sums of money and time?  We are here to make things easier, not more difficult for one another. 

Please let us be respectful of one another, please let's decide that we are here to stay and let us take time to explain our positions - and please please let us give one another a chance to explain.  I came to this site in desperate need for information for my son - I stayed because of the friendship and support - and the opportunity to give back what I have received.  I know that you are all here for the same reasons.  I am inspired by all of you and your good spirits.  Kathy, you need to encourage us when we are down - and every other person here has to keep doing their thing.  I plan to keep doing mine. 

Best and much love,

Sharmin 

I'm in Singapore and it's very late at night so I don't know if I'll cover everything.

First, I realize that many of the older thals actually attend very little of the scientific programs and I know this because I do. However, I did see many parents at these sessions trying to gain valuable information about various issues that confront them. It simply isn't true that people don't go, but no one would know this without going themselves. Not everyone goes to conferences for the drinking. Some actually do learn.

Kymn, you feel offended because you have worked very hard to put this together, but frankly, none of that can excuse a goverment so blind that they think they can stop the flow of information. Medical information is presented regularly in tv shows and is also all over the internet. I will never defend any government that tries to prevent the free flow of information. But I am also somewhat insulted by your words because I spend countless hours online reading the very topics that you are brushing off here. And if you bothered to read some of the in depth posts I write you would be well aware of this fact. I do not let any subject scare me away and have even readily learned about non-thal blood disorders in order to help the non-thals that come to our group for help. I did intend to sit in on many programs that I am now not allowed to see, and especially the specific program you have dissed.

    *  Gene Therapy - Is It A Reality?
      Dr Michael ANTONIOU, United Kingdom
    * Molecular Therapies in Beta-Thalassaemia
      Prof THEIN Swee Lay,
      United Kingdom
    * Oxidative Stress in Thalassaemia and
      Haemoglobinopathies: Mechanism and Treatment
      Prof Eliezer RACHMILEWITZ, Israel

I have great interest in all of these and I had even asked you previously about the closed lunch dealing with oxidative stresses. Prof Eliezer RACHMILEWITZ is scheduled for both and I have great interest in her research. FYI, combating oxidative stresses is one extremely important thing that every patient can do and learning more ways to do it can only help.

Some other comments. Chewing gum is actually healthy if the gum type is not full of junk. It cleans the teeth and helps digestion. I am not the only vegetarian attending and in fact had dinner with a few people tonight including another vegetarian. Please don't act like it's such a big favor to accommodate us. Vegetarians hear this crap way too much and it is bull. We have just as much right to eat as anyone else and it shouldn't be going out of anyone's way to accommodate it.

As far as boycott, I encouraged two people who were considering canceling to come and they both will be.

And I could go on for days about those who get the worst care and the reason I made India my first conference was to try to emphasize just that. More Indian children die from thal every year than anywhere else on earth. Far more. These people will not be represented at the conference. Yes, there are Indians coming but they can tell you themselves that by far, they are the very lucky ones. I haven't heard of any TIF conference planned for India.

I could also go on for day about the many problems of your government, but also mine. I will never defend the actions of either. You may like the restrictions but I prefer allowing freedom. It may be a dream but in a world where the people are so completely indoctrinated that they can't even see the repression in their own world, I will not give up my beliefs and ideals. Both out governments suck and I will never hesitate to say it and please don't try to defend a country that has the highest per capita execution rate on earth. And I won't defend my own government's warmongering ways.

It is so completely ignorant for your government to have these restrictions when one can turn on ER or Scrubs and be treated to in depth medical knowledge on a regular basis. What is needed is someone who could make this case to them in a persuasive way. Perhaps you should have done like others and asked for my help in providing a persuasive argument while there was time to do so. I do write a good letter and can back up arguments with reason and can even point out inconsistencies in government arguments. By the way, these are SCIENTIFIC programs, not medical. That is why it is called Scientific Programme. Is science also prohibited to the masses?

I'm going to sleep. This whole thing is ridiculous and I will stand by my statements that TIF has no business holding conferences that exclude people from so many topics. Everyone in Singapore can be pissed at me but I really don't give a damn. I have helped way too many people to worry about hurt feelings. I came to try to gather more information to help people and to learn what is on the horizon. I will still do whatever I can regardless of the restrictions.

I just want to quote something Sharmin said.

Andy's research and advice has changed my life and countless other lives.

That is why I am here in Singapore and I will do my best. It mean a lot to me to help and if I fight it is just because of that fact. I have no reason to be involved other than someone needed to do it. Lisa knew I was needed and it is is why her group was left in my hands. Her family has always backed me and my work and greatly appreciate that I have been willing to carry on Lisa's legacy. I do fight for thals and most of them do appreciate that.

To Andy   

Way to go my friend,I am very proud of you for your courage , intergrity,and   your honesty.

I am not going anywhere I'll be around,
Take care
Kathy

To Sharmin,

I need to be free to express, myself freely and accordingly  that is being true, open and honest with my friends,

I also believe that without spoken words there would not be any change in our society.

I believe that I must not be frightened of the government and other human-beings.

we are all here, because in some way or another we feel oppressed in a sense that we can't get a reasonable result .as to why ,some of thals sufferes are dying early in life, and some without  medications and proper care.

For me to get answers I have to voice my opinions and ask questions  and at times say words that others might not like,  so be it.

Popularity is not important to me, but a cure and good cares for all thals sufferers, is my utmost concern.
Freedom of speech is important to me,I gave up my extended family ,  my community and my country ,so that I can enjoy the freedom of democracy.I have given up so much .Please don't ever tell me not to type my words that are important to me.
Oppressive people wants nothing but to shut the loudest. how dare they ?Now and then, we need to rock the boat.
nothing stays the same.criticism is a part of change too,without it we won't know how

Kathy





I will continue to talk .talk.and talk.

Long Live Andy ,
You are great buddy ..
wat a super rocking entry it is   ..
you are real representitive of Thals  .... Keep it up ... we all are with you .... carry on buddy ..
at least i m with you .... hope you will get alot of info for us .. waiting for you and the story of the conference .. take care andy  .. you are more prescious for us than the conference....
 
best regards
umair

Andy,

Thanks for standing up for us.  What you learn will help thousands.  I hope that I have the strength to do the right thing in the face of adversity.  I hope that I can do my part in helping you in whatever way that I can.  You go through a lot for us - being attacked can break a person - and be very damaging -  yet you endure it all of the time for us.  I don't know where I would be right now - were it not for you.  God bless you in continuing to do your work. 

Sharmin

Andy, i applaud you for your honesty, intergerety, courage and also for u standing by all of us and by what you beleive in. 

I would like to add something more to what you have said.

And I could go on for days about those who get the worst care and the reason I made India my first conference was to try to emphasize just that. More Indian children die from thal every year than anywhere else on earth. Far more. These people will not be represented at the conference. Yes, there are Indians coming but they can tell you themselves that by far, they are the very lucky ones. I haven't heard of any TIF conference planned for India.

Yes, when it was said that this conference was for people in Asia who did not even know what thalassaemia was and why thier children dying, and that they didnt even have access to blood, the first thing i thought was, i wonder how many of those just mentioned would be able to afford such an expensive conference. I would only believe that they (TIF) are holding this for those with less privildges in Asia only when atleast a fair number of them are represented. And like Andy said, India would be a good place to start.

It is so completely ignorant for your government to have these restrictions when one can turn on ER or Scrubs and be treated to in depth medical knowledge on a regular basis. What is needed is someone who could make this case to them in a persuasive way. Perhaps you should have done like others and asked for my help in providing a persuasive argument while there was time to do so. I do write a good letter and can back up arguments with reason and can even point out inconsistencies in government arguments. By the way, these are SCIENTIFIC programs, not medical. That is why it is called Scientific Programme. Is science also prohibited to the masses?

Absolutely true on both accounts.

Sharmin, Thank you for being so patient with all of us through this hightened emotions of frustrations and disappointements. 

and Kathy, am so glad u decided not to leave the site. I always feel comforted by your wisdom and constant encouragement you give to all of us. Keep posting.. 

Andy,Manal,Puuja and Mariam,

Bon Voyage and stay safe,i am happy that you are all there for us,and i am sure you'll bring home some valueables thanks a lot for sacrifying your time and money,especially Andy,who went solely for us,as he has no one with thal in his immediate family.

Eponine,

Thanks a lot for doing what ever you did to organize this event,i am sorry you have to juggle through your transfusions and everything.

Let's be humble and kind to each other i know it's hard for people who spent a lot of money and time to accept this situation,but governments can be idiotic sometimes,as we all know.

As Sajid used to say,We are one big happy family.

Zaini.