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55477 Posts in 5941 Topics by 6281 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: International Thalassaemia Conference registration  (Read 66403 times)
priya
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« Reply #15 on: February 06, 2008, 01:34:03 AM »

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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Manal
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« Reply #16 on: February 06, 2008, 02:20:42 AM »

Me too i  totally agree, but please tell me the procedure

Manal
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Eponine
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« Reply #17 on: February 06, 2008, 10:54:09 AM »

O.M.G.  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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Miaki
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« Reply #18 on: February 06, 2008, 01:19:21 PM »

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  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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Danielle
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« Reply #19 on: February 07, 2008, 10:04:41 PM »

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??

 
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§ãJ¡Ð ساجد
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« Reply #20 on: February 08, 2008, 07:37:36 AM »

Indeed! I'd rather have Andy sent than myself as he would represent all of us.
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اَسّلامُ علیکم Peace be Upon you
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Eponine
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« Reply #21 on: February 09, 2008, 09:11:28 AM »

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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Miaki
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« Reply #22 on: February 21, 2008, 12:29:46 PM »

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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Canadian_Family
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« Reply #23 on: February 21, 2008, 04:53:20 PM »

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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Tifosi
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« Reply #24 on: February 26, 2008, 04:21:11 PM »

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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Sharmin
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« Reply #25 on: February 26, 2008, 07:56:36 PM »

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 
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Sharmin
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« Reply #26 on: April 04, 2008, 08:21:05 AM »

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....

 



Nur
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Maako
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« Reply #27 on: April 21, 2008, 01:56:13 AM »

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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Maako
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« Reply #28 on: May 19, 2008, 05:43:06 PM »

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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Sharmin
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« Reply #29 on: May 19, 2008, 10:24:19 PM »

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? 

Sharmin
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Sharmin
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