Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Eponine on February 01, 2008, 05:05:11 PM
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Dear friends,
On behalf of the International Thalassaemia Conference Committee 2008 I am pleased to announce the launch of the website.
Please check it out for more information of the conference, registration, sponsorship or if you have any queries.
The website is officially launch at: http://www.thalassaemia2008singapore.org
Hope to see you in October 2008 at the conference.
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Thanks Eponine :hugfriend
Dimple
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Thanks Eponine for the much awaited news.
Do we have to register to view the details such as Accomodations?
I want to know more about the sponsorship.
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Eponine,
The registration form asks for a fax number and will not allow one to proceed without it. Isn't this a bit unusual? Not many people have their own fax #. I am unable to register as a result.
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Andy,
Really? But I completed the registration without the need for a fax. However, I will check this out for you. Will revert to you as soon as I can.
Sorry for the hiccup
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Hi Nur,
Hee... the sponsorship part you see on the website is for companies looking to sponsor the conference or parts of it. :blush
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Registration fees are quite high to the point of being prohibitive for many people. Why is the dinner so costly? $200 Singapore dollars is over $141 US dollars. ??? The most expensive restaurant in town doesn't cost this much. With travel and hotels I estimate it will cost me about $3000 to come. Seems unlikely I will be there. Sorry.
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:huh
$200 for a dinner...OMG I have never paid that much for a dinner...Even when the society has a dance on our tickets arent even that much...WOW
Andy I think thats how much its going to cost me to go too...And I am in australia which is closer to singapore...
OH WELL
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After the Dubai conference, I am very wary of paying a lot for food since vegetarians are usually a second thought at best when planning a menu, even though there are many vegetarians among the attendees at thal conferences.
Ashish railed at the concept of charging patients registration fees and had planned on coming to Singapore without registering and not attending any talks but being at the conference center, nonetheless. TIF never listened to him but instead sent the Mumbai association a gigantic bill for membership. With Ashish now gone, much of my reason for going has vanished.
I am in a somewhat unique position being neither a patient nor a family member and not a medical professional. However, I have had more than one patient tell me I do more for thals than all of TIF combined. But I have no funding at all and every trip has been paid for out of my own pocket. Sponsorship by an org is unlikely as the patients come first, as they should. In the end, my desire to do what is right (Gandhi said “You must be the change you want to see in the world.” ) has to be tempered by what is financially viable for me. As much as I want to see a world where decisions are based on what should be and what is the right thing to do, regardless of one's own self-interest, I find what I can do is extremely limited by lack of funding. I have considered starting a foundation but time limitations make that unlikely, as between my store and the thal site, I spend over 100 hours working per week. If any lawyer wishes to donate time to help me set up a foundation, please speak up. Don't be shy now. hehe.
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Andy
I agree with you.... I have been to a few international conferences and as ashish did for one of the conferences I didnt pay for...but australia is registered with TIF...
But all the patients have to pay a registration fee too...not only the dinner...And I can tell you that the registration fee isnt cheap either...
When I went to Malta I had to pay nearly $500 AUD to register...plus that wasnt cheap...
Plus we paid for the dinner that we all went too....
Well to most of us Andy you have been more than a family member and you have helped some people in ways that doctors cant....
I consider you as part of my family :hugfriend
And I hope that there is some way that you can attend the conference and I hope that I can attend and meet you in person :biggrin :bighug
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Hi Andy, Smurfette
I hear you. The registration fees, although it may seem like a really high price to pay, is actually heavily subsidized. We do not make any profits at all in this price, in fact, we make a lost becuase the cost price per participant is definitely way more than that.
If we could have our way, we would furthur subsidize all parent, patients and supporters. Yes, there is a supporter component in our registration for people like you. In fact, I was thinking about you when I suggested that component becuase there needs to be a submission of medical report from your doctor if you were to register as a patient. I really hope to see you at the conference not because I want to 'earn' your money, but becuase I want to see all of us who are pouring our hearts out here getting together finally and being able to see each other to continue encouraging and spuring each other to carry on in life.
I get what you mean when you talk about TIF. Sometimes I wonder if they have forgotten about their objective of setting up an organisation or have they been blinded by money.
As for the dinner, it is the gala dinner which is optional. You can choose NOT to go for it and it will not affect your education from the conference in anyway. It is priced at so high because of some difficulties. We have hotel at different rates. Will those meet your budget?
Oh BTW Andy, the fax no. requirement has been removed.
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Eponine
Well I think that TIF has forgotten about their objectives of setting up a organisation... They have been blinded by the money side of things... As they say money talks and B***** walks... Well its true in many ways...
As for the dinner its the dinner that most patients go to and have a great time...Thats when we can all get together in a relaxed atmosphere and goof around, talk to others and even get to know some others there that they didnt see while they were in the meetings or what ever....
Its still a long way for the conference..I cant make any decisions on attending now...I dont plan anything until the last min...Because when i do plan things from months ahead, they usually dont go according to plan..
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I am in a somewhat unique position being neither a patient nor a family member and not a medical professional. However, I have had more than one patient tell me I do more for thals than all of TIF combined. But I have no funding at all and every trip has been paid for out of my own pocket. Sponsorship by an org is unlikely as the patients come first, as they should. In the end, my desire to do what is right (Gandhi said “You must be the change you want to see in the world.” ) has to be tempered by what is financially viable for me. As much as I want to see a world where decisions are based on what should be and what is the right thing to do, regardless of one's own self-interest, I find what I can do is extremely limited by lack of funding. I have considered starting a foundation but time limitations make that unlikely, as between my store and the thal site, I spend over 100 hours working per week. If any lawyer wishes to donate time to help me set up a foundation, please speak up. Don't be shy now. hehe.
Andy,
I salute your dedication and I like it more because this is for people most of whom you don't even know, which is really selfless. I think you do so much for other's that I feel like your attendence would benifit others. Your insight helps a lot to those looking for answers plus you think from a patients prospective.
For the financial side, I am ready to chip in with some money for you to go and attend the conference. I think that would be a huge plus for us. Members, what do you guys say? I don't even know, if I should be mentioning this as it goes into financial issues, but this is something I feel we should do for our superhero (Andy). What say folks?
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Well said Naren,
Andy,
You are a unique individual. We have a beautiful 13 month old baby boy. When my wife, who is Thal Int was expecting, many on this site offered their advice and support. Your support, hard work and love is greatly appreciated. I understand Naren's hestitation to bring up financial issues on this site, but I am prepared to help out in whatever way I can.
Regards
Bharat
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I agree with Narendra...Andy, within a short time, I noticed that you are an wonderful individual, giving all the support to the forum members. I am also wiling to help on your trip to singapore.
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I too agree with all of you. Mrs. Andy you are simply great person. Your Support, Love, dedication and knowledge for Thal is just can't express in word. Thanks a lot for always being there for us. I would also like to help you in whatever way I can.
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Me too i totally agree, but please tell me the procedure
Manal
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O.M.G. :grouphug you guys are really amazing people...
Andy, I have brought up your situation to my president and we really empathize with you. We would also would like to help as much as possible in our capacity.
Gonna PM you. :naughty
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Greetings to all,
It's certainly been a long time between posts, alot has happened in my life loosing two significant people and well the show must go on and I am back to assist Andy as much as I can as I have promised in the past and more recently via our chats. Also for the fact that both Stan and Ashish would be :bat :letsgo well need I say more.
Now back on the subject of the topic.......
1st: I think the Singapore Conference will be an exceptional conference with great integrity and A1 class....Not that other countries have not measured as high Dubai was excellent, Italy was ehh so so and Greece was OK!
2nd: Having Epomine on the Singapore Board is excellent and I am sure she will do what she can do pass on the patients veiws regarding to the conference.
3rd: TIF does have great demands on a hosting country and does specify specific needs and criterias that the hosting country must meet. HOWEVER, I think TIF fails to realise that this conference is about Patients meeting other patients, sharing experiences and also making it affordable for patients and families to attend. In this case Singapore is the host and Singapore needs to cover its costs so they loose however TIF should step in and say well all patients and families will be given a confession rate.
4th: In regards to Andy attending the Singapore Conference, I think we should speak to one of our drug companies to financially support such a person. Andy is neither a parent or patient with this condition however he dedicates so much time from his personal family, his livelyhood and his own personal time from himself to be here with us and attend to our needs. Andy within the thalassaemia community should be recognised for ALL he does to us and no better for OUR drug companies to put their $$$ were their mouth is and foot the bill for Andy. Without Andy some of us would be lost......true??
5th: In relation to the cost of the gala dinner ITS WAY TO HIGH for anybody to attend let alone the patients. Personally I don't give a hoot for the big nobs on how much they pay (the sponsors will pay for them) but for the patients and parents I do. I gate crashed the Greece gala dinner along with AD and another dear friend of ours and we had a ball. I am very proud of that moment as i wanted to attend that dinner coz ALL MY FRIENDS WERE GOING and why should I miss out because TIF didnt organise themselves. You don't learn anything from the dinner apart from who the big heads are , who the patients are and who the sponsors are. And why shouldnt the patients be all together with their friends for the final time? As we know and Andy and others that attended the Dubai conference and will attend the Singapore confernce there will be some beautiful souls missing but i am sure they will be watching from above.
and for my final point
6th: I wold like to ask and please direct me to whom I should place this request too in writting. I would like the opening of the conference to have a minute silence for all our lost souls, that have previously attended the conference and will not be there with us. We should have a minute silence to honour their hard work their dedication their everything that these international conferences stand for.
Lisa - Stan - Ashish - Peter - Dr Panos Ioannou - Mohd Affan - for Sajids dad - Mr. mehmood - and the list goes on.........
Well thats my news, they are my thoughts and I shall be seeing you all in Singapore if all is well.
Miaki
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Andy within the thalassaemia community should be recognised for ALL he does to us and no better for OUR drug companies to put their $$$ were their mouth is and foot the bill for Andy. Without Andy some of us would be lost......true??
:agree
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Indeed! I'd rather have Andy sent than myself as he would represent all of us.
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THanks Miaki for your support. It is certainly NOT easy dealing with TIF and their demands.
I have spoken to my President and are looking into point 4 ourselves. We will help to look a way to bring Andy here.
As for point 5, I will talk to my president and try to bring the cost down.
Thanks
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Hi Epomine
Good to hear from you and thanks for taking some of those points into consideration. Let me know how you go.
Miaki
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Count me in to financially support Andy. I am also looking to see if my SPG points can be transferred to Andy (For hotal stay).
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I just got the news about this conference from my federation today. Havent been visiting this site for a few good months so i didnt realise that almost 2 years had past since TIF in Dubai 2 years ago. The good news is this time the conference is held in Singapore where I can realistically think of going. But the cost of it still mind bogging me as I am still currently studying and do not have any source of income yet. It is not cheap as 360 SG converted to Malaysia Ringgit would cost me around 830 and mind you my federation would not be sponsoring me at all. Other expenses like accomodation and traveling is not included.
Well, I will see what i can do and see if i could get drugs companies to sponsor some of us there. If we get sponsors, it will be very much likely to be the drug companies and I am not putting much hope for local NGO to do so.
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I agree with everyone who has posted - Andy's presence at this conference is essential - the information he provides to thal patients on this site is vital. I hope that it works out - thank you Andy for your dedication to us :hugfriend
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Hello,
I totally agree with you Tifosi. Being a Malaysian, i am expiriencing the same thing too. After the Dubai conference, i'm keeping high hopes to attend further conferences. When i first heard that it would be held in Singapore, i am quite happy because it really is near. But unfortunately after looking at the circumstances now, it is not that cheap like i had imagined. I am also not working and money is a big issue here.
I dont rely on NGO's or the Federation to help me at all in this matter. I dont know what are their plans anyway...I doubt that they are actually planning to bring patients along with them. As for the NGO's or local Thal associations, it is impossible to join too due to 'insufficient budget' or some 'internal disputes'.
The best option seemed to apply sponsorship from companies. Up until today, I still havent receive any positif feedback....
What more can i do...? Each day passsed, i still keep on thinking about going to Singapore, how to raise money etc...
deep down inside, i still have a hope in attending even thought in reality, all is still a blur....
:sorrow
Nur
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hi eponine,
am also thinking abt going to the conference despite the expenses.. however am not sure how my schedule for classes would be in october, hence, cud u pls find out what are the refund options i have incase i cant make it?
thanks
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Hi Eponine,
I attended the Dubai conference, which was brilliant in all aspects. As many have already voiced their concerns with regards to the cost for the Singapore Conference, my concern is whether the registration fee covers lunch for the 4 days, as this was covered under the registration cost for the Dubai conference. A colleague of mine states, that it doesn't but that TIF are looking into it. Are you able to shed any light on the matter, as this too would be an additional cost on what seems to be an already expennsive trip/conference.
Yours Saj
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Is there some way for us to ensure that Andy can be at this conference without having him incur a personal cost? Helping him attend would enable many others to receive important information. We have all relied on his resourcefulness and dedication, we all know how committed he is to this cause - how can we help him be where he needs to be? :hmm :hmm
Sharmin
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I asked our member from the Singapore association and she said the following about the lunches being included.
As much as the budget allows, as much as possible, as much as we would try our very best, we will provide, or find some way to.
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I am pleased to inform that our company, Resonance Health: provider of FerriScan, would be exhibiting at the TIF Conference, Singapore in October.
Our Chief Scientific Officer, also one of the founders of FerriScan, Dr Tim St Pierre would be there to meet and discuss any queries all of you have on FerriScan.
I will be posting more information on our exhibiting booth once I receive confirmation from the event organiser.
Looking forward to seeing you in Singapore!
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Hi all
I have been told that registration does NOT include lunch ....if this is the case hmmmmm :huh WRONG MOVE whoever organised that.
@ sgoh, say hi to tim and I'll be looking forward to seeing him in Singapore.
Miaki
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Miaki,
I think you'll agree that the conference lunches are a main social interaction event where everyone actually gets to meet each other. At Dubai, I had lunch with a different group every day (including you) and I found the lunches were where I met the most people. I cannot believe the organizers are unaware that this is one of the most important ways for people to meet each other in an informal setting. I hope they reconsider, especially considering the high cost of registration. The vague answers given about lunch on the Singapore conference Facebook site are disheartening.
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I have just receive confirmation that the lunches will be included with registration for the Singapore conference. That's good news. The lunches are a great place to meet up with everyone. Now, don't be shy. Come on up and say hi. :biggrin
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wooohoooo thats exciting news.
Yes the lunches are a great way of meeting and bonding with people.
Miaki
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Hi guys
Sorry I've been away for so long.
Yes lunch is definitely provided for.
BTW just to inform you guys, the parents patients program this year is planned for for all 4 days instead of the 1.5 days that was held in Dubai. So we will have more time to sit around and whine to each other... :rotfl
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Hello all
I have also received confirmation from the organiser that Dr Tim St Pierre has been accorded a presentation slot at the parents and patients session. I will post more details on the date/day of the presentation once more info is provided.
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Hello!!!
The Singapore conference registration and gala dinner fees are definately not easily affordable even for those from the medical profession.
There are many like myself, who are interested in Thalassaemia, but are not related to any clients directly. Having worked in Prenatal Diagnosis for Thalassaemia as a counsellor and technical person, can neither qualify as Nurse, etc catergory, nor as parent.
In the past having attended the Malta, London and Dubai conferences would very much like to attend the Singapore Conference. Presently am not in paid employment but just doing voluntary work so registration as Delegate is unaffordable. Would like to register as Supporter, (even this is not really affordable) but:
The registration for supporter asks for the following:
"For verification, supporter is required to submit a copy of the medical records of their charge with the completed registration form to the Conference Secretariat."
Can the Conference Secretariat consider regisration as Supporter for people interested in Thalassaemia?
Registration as Patient/Parent/Supporter includes:
"Admission to all sessions in the 13th International TIF Conference for Thalassaemia Patients & Parents 2008 (excluding the 11th International Conference on Thalassaemia & Haemoglobinopathies and the Pre-Conference Workshops) and trade exhibition."
In the past conferences one was free to attend the Scientific Conference as well as the Patients & Parents Conference freely, then why this restriction at this conference. Please correct me if am wrong. Could the Organisers throw some light in this regards please?
Hope all those wishing to attend the Conference will somehow be able to attend the same.
Smita
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I too, am distressed at the costs involved for this conference. I am a volunteer, yet would still have to pay a much higher registration fee than I did at Dubai. I did talk to Eponine and found that the medical records requirement has been dropped..
As high as the fees are for this conference, that is only a drop in the bucket for me. Airfare from the US and the extremely high cost of hotel rooms make it nearly impossible for me to even consider going. Yet, somehow, thal associations manage to put people up in 4 star hotels. I am told on Facebook that this is not a gathering of the elite, but it really does seem that unless you're an insider at one of the associations, you can forget about going. I do not get any sponsorship but still get some flak from people because this group is now accepting donations. These small donations have been used to pay website fees and finance the mailing of needles to patients all around the world, yet somehow, this creates resentment in some of the association people, who seem to want every nickle for themselves so they can live it up it grand style at conferences. If they, in good conscience can justify fancy hotels as a priority over helping their fellow thals, then I am missing something.
I seriously doubt I will be at Singapore, even though it does mean so much to me to hear the medical presentations and meet patients and their families. However, since so many people won't be going, the latter becomes nearly irrelevant. I will continue to do my best by sitting in front of a computer screen and offering help, packaging up needles (I am running out, so that will also cease soon), and mailing them. If I get anymore donations, they will most likely be used to purchase needles to send to patients. The costs of going to Singapore are so high that it is not realistic to think even 10% of the cost can be covered by gifts to this group.
It appears the International Thalassemia conferences are on their last legs and I seriously doubt we will ever again see a conference on the scale of the Dubai conference. Registration for Singapore is way down from Dubai and the costs of international travel will make it extremely hard for people to go anywhere. It is a shame, but the manipulation of the dollar and oil prices by the powers that be are leaving us with a world too expensive to live in, and this of course, is far outside the realm of any organizations and associations.
I do also wish more people would be able to afford this conference, but without some massive influx of sponsorship funds, this does not seem likely.
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I also want to remind people that the early bird discount period for registrations is ending very soon. Beginning July 15, the registration fees jump higher. I don't know why the fee is rising considering how slowly registrations have been, since a higher fee will make it even more unlikely that people will register, but this is the case.
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In Mumbai, India, we do not care a hoot for TIF .... the last conference they had here was a medical one around the time Kelfer started trials in India, back in 1987, I think. For some reason, the Delhi Thal Association gets all the benefits of associating with TIF, and the rest of the country gets nada. Delhi Thal association can not even be bothered to reply to our messages (representative of TIF, I guess). But, that is okay and besides the point .... we do what we can.
This is an idea that was originally broached by Ashish to me - we set up a rebel league - with Thals as the centre of the organisation, not doctors or parents. And, we have our own conference, where thals hold centre stage, discussing all their problems and finding solutions. I believe that collectively we probably know more, in general, than the doctors and this website is a vindication of that thought process.
Ashish was planning to do a conference in Mumbai, inviting all the patients from the world over, at zero registration cost. You pay for your airfare and stay (nominal) and some nominal cost for food and that is it. If you get the thals, I think the conscientious doctors would have followed, and we could have had a scientific day, in addition to 2-3 days of just patient interaction. In any case, after attending a few of these scientific conferences, I found that they just say the thing over and over again. It would better to probably have a " meet the doctors", running in parallel to the Thals conference. We had worked out some of the logistics, as well. The target was this year, 2008. And, then Ashish moved on.
If others are serious about this, I can set the ball rolling again.
Poirot
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After two days of searching, I finally found reasonable airfares. I am happy to announce I will be attending the Singapore conference! :grin
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:yahoo
That's awesome!!!
:party :party :party
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That is great Andy, Congratulations to all of us :yahoo :yahoo :yahoo :yahoo :clap :clap :clap :clap
manal
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:what
WOO HOO...
1 IN..........
ALL IN :friday :cheer :yahoo :clap
:high5 :happydance :stars :party
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Great News,
The best representative is going. Andy, Thank you for your efforts.
I am so excited right now.
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Yeaaahhh Andy!!!
I'm so glad that you will be there!!! It's better than being there ourselves!!!
:yay :yay :yay :yay :yay :yaaaaaay :yaaaaaay :yaaaaaay
Sharmin
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Good news Andy.
I'm happy for you .I hope while you are there you have the opportunity to voice your opinions and you are given the chance to ask questions ,so that you can relay to us.
It should be interesting to read from you.It will benefit most of us.
My message is Tell "them" the doctors in Perth west Australia, ignore, or dont deal with patient with sickle cells appropriately,I am left on my own device to deal with my pain crisis that is because the doctors don't
dont acknowledge that it exist,
I hope that there will be a health representative from Western Australia and hear the complaint.
I'm here suffering a painfull slow death. this is a shame on the so called "developed society"
Good luck
Kathy
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Hi all,
Good to hear that you will be attending the TIF conference in Singapore in October. Looking forward to seeing and chatting with you once agian.
Kathy: In response to your message you posted, its a shame that you are still not getting the proper care. However, I might have some insight for you at this stage. Please message me privately so I can forward you the correct person to go and see in Perth regarding Sickle Cell Anemia.
Miaki
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Kathy,
I am so sorry to hear that you are going through such a rough time. I hope that you get the help you need very soon.
I'm praying for you dear :pray
Sharmin
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Kathy,
I'm sorry to hear what you have to deal. Imagine, I thought that S.C anemia is more well known than Thal. and still you have to go through all those idiots :mad
I hope you find better doctors soon.
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I just officially registered for the conference. I would like to let people know that the early registration fee is still in effect, even though the site says July 15. If you go to the registration page, you will find the fees are still at the early level. After a request was made, the organizers decided to extend the early fees for one more month, so get registered soon.
And a big thank you to the organizers for listening!
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thank Sajid
Next time I will :bat :bat :bat :bat then they will have a reason to lock me up
:rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Kathy :wink
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That's a wonderful news Andy,Congrats :hugfriend i would love to attend any such conference,but with the devaluation of our currency it seems like a fool's dream.Anyways you being there is enough for all of us.
Kathy,
I am really sorry for what you are going through,but i am sure you are strong enough to deal with that,we are all with you. :hugfriend
ZAINI.
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hi andy :
:yay :congrats Andy :
best of luck andy ... its good to hear that you're going to attend the conference .bocze you r the best one to go there ... i hope you will bring some good news for us... we r waitng to hear some good news... good luck buddy ... wish you all the best for ur and our cause too ....
i m also keen to attend the conference but having the same prob that zaiini mentioned ... i want to meet you all .. n wish that my dream will come true soon... zaini, sajid, asim, and all other thal of my country i m sure that i will meet u soon ... not to all but i will try to meet to as much of you i can meet... hahhhaha
umair
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... i want to meet you all .. n wish that my dream will come true soon... zaini, sajid, asim, and all other thal of my country i m sure that i will meet u soon ... not to all but i will try to meet to as much of you i can meet... hahhhaha
umair
The National Thal. conferences are a great place to do that. I was there at the last one in Lahore and met a few members that are in Orkut.com 's one of Thal. communities.
I don't know where the next one will be. I hope it's somewhere where J.S.F will be willing to attend.
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hey sajid :
if it held at JSF then dont forget to call me buddyy !...
i know in 2007 it held in lahore .... i think we have to try that alll of us join the same confernce on thal day so that we can meet togather ... i dont demand to meet at place out side thal related site .. hahaha well i keen to meet you buddy .. i want to see that to whom i m talking to a long time .. yeah some time i will surprize you if it could b possible ... hhahah ... dont worry buddy i m not sayin to do something extra effort to mmeet ..... it will happen by chance ... not by will ... so dont worry ... well i have some latest snaps of my self set a time .. i will add that to gallery for a little time for you
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That's a great picture.
Please keep it there and don't remove it.
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hi everyone,
I've got the best b'day present ever...I am going to Singapore! I'm so happy that i cant stop smiling. :biggrin :yahoo
Finally, I will be able to meet you guys. :veil
:boogie :boogie :boogie
:biggrin
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@ sajid
thanx sajid ... i will not remove that pic /..... thanx buddy for a good sugesstion
@ nur
its great to hear that u r going to singapore to attend the conference ..... i hope u will find it usefulll .... ... so best of luck ... wish u all the best ...
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Nur,
I am so happy to get the chance to meet you again. Your news really made my day. :yaaaaaay
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Happy for you Nur :yes
ZAINI.
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Oh yeah!
The more the merrier!
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Thank to everyone who cheered me about going to Singapore :biggrin
I felt like a huge family already :bighug
so who else can i expect to see in Singapore? i might not know all of you and i am counting on Andy to introduce us all...Is it alright with you Andy?
:hithere
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I tend to meet a real lot of people because everyone introduces themselves to me and everyone who is there better do just that. :wink If you can't find my bald head, just listen for the noise, because me and AD are gonna be making a racket!
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Hi NUR
I"M SOOOOO happy to hear you are coming! Did TIF agree to your sponsorship? Or you manged to get your NTA to sponsor you?
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Hi all
I'm very upset reading how so many of you would love to come over to Singapore but cant. I so wish there was something I could to help financially. :sigh
Again, I have to apologise for the high costs for this conference. We have already tried to lower it as best as we could. The drop in USD affected us as well. No doubt it is rising again, but its a little too late. Losses have been made.
But then again, wasn't Dubai's registration higher than ours? :scratch
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I tend to meet a real lot of people because everyone introduces themselves to me and everyone who is there better do just that. :wink If you can't find my bald head, just listen for the noise, because me and AD are gonna be making a racket!
Lucky you :sigh.
ZAINI.
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Eponine,
There isn't much any of us can do about the changing world economy. Flights, hotels and expenses just keep rising along with the price for basic foods and we are powerless to make any effect on these things.
It appears that the only answer is to find better ways to raise funds for thalassemics and the organizations that sponsor these important conferences. One source of funding that remains poorly tapped is the Mideast countries that have enormous oil revenues. We talked about this with Dr Michael Sadelain at the Dubai conference as he was in the early stages of raising funds for a gene therapy cure for thalassemia. He was hoping to raise some money from the sheiks in Saudi Arabia and Kuwait. As far as I know, these efforts have been mostly futile. Even though thalassemia is a major health issue in these countries, little money from these very wealthy people is being directed towards research. A sheik feels fine about spending $300 million on a private jet, but try getting $3 million for research. It's a shame and it is no longer just the West with the misplaced priorities.
We need to find ways to tap into these great amounts of wealth and get some directed towards our very important goals. Any and all ideas are welcome.
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dear Eponine,
I managed to get partial sponsorship from my NTA. I'm so happy cause two of my best friends are selected too! they both get sponsorship from the NTA. If i'm happy to go to singapore, just imagine their shock and thrill because this is their first trip outside the country attending an International Thal Conferece. The excitement is so overwhelming!
So, you'll have to take us and see singapore! :biggrin
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:congrats
I'm so happy for you!
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Dear Sajid,
Thank you for being happy for me...and to all of you who has congratulate me, i'm very touched by it. Sorry if i took so long to reply back. Sometimes i don't feel good enough that i only come online to read messages...
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[color=#ffeb00]i wish i was one of the characters from the wizard of oz
the lion wanted courage
the tin man wanted a heart
the scarecrow wanted a brain
dorothy wanted to go home
toto probably wanted a biscuit
and I just want an opening line!hahahha [/color]
this is so funnny :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
I'm amused what funny lines :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl
Just the picture of us in the wizard of oz.
Kathy
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:rotfl :rotfl :rotfl @ Kathy
wish I had some magically powers too..
I am not able to go due to my health issues and other issues due to family as well...
Would have loved to go..would have been a blast...
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@ Smurffette, :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
There will be other ITC ,
Have faith ,the worries will improve . live with hope that the next time you will attend.
right now you know you are doing the best you can, that is all, that matter.Keep up the good work and the positive outlook on life. In life we need to have priority.
Take care
Kathy
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Does any body know where will held next TIC ??...
realy keen to attend that conference ...well i will try my best to attend next year ... it seems like a good place to peolpe like me ( thals ).. ...
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Hi all
Those who are intending to register for the conference but have yet to do so, please please get on it. We are forced to limit registrations due to low resources. We do not want to do so but we need to see registrations from parents and patients picking up.
Thanks all. REGISTER NOW!!
:bat
heehee
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Hi Eponine,
I did the hotel booking on August 17th and no body confirmed me till now. I called them by phone and they said that they will be working on it and answer back, but still no answer. Any idea how to solve this?????????????????????
manal
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pls email me with your full name so that I can forward it to my conference secretariat for attention.
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is there any financial help with this trip for families who cannot afford it>?