The Singapore Conference: Are you more likely to go if Andy is going?

At this point in time I cannot guarantee that I can go to the Singapore conference even if somehow I can afford it, which seems unlikely. There are personal factors that won't be cleared up until summer, so I cannot make any commitment before then.

However, I am considering seeking sponsorship (perhaps from the drug companies, as Mia has suggested), and I would like some feedback from our members to show to the drug companies to support the contention that attendance will be better at the conference if I am present (gosh, that sounds egotistical, but isn't intended that way). If my presence at the conference is one of the deciding factors on whether or not you go to the conference, please let me know.

Dear Andy

If you find out that it will also be better that we all sign a form or a petition and send them to drug companies, please let us know. Your attendence is so important to us all

Manal

Hi Andy,

As you know that many members of this site won't be able to go due to financial expenses,i am dying to go but i don't think that would be possible for me first due to expenses,and then due to my husband's buisness problems,like Sajid, who so totally deserves to be there,but won't be able to go unless any sponsor can pick him up,so the thing i wanted to say is that although we ourseleves won't be able to attend, but we'd love you to be there as our representative,unless you are bound with your personal problems,that's ok then,but otherwise if you would be there at the conference i'll feel like my voice is spoken there somehow.So plz let us know if we can do something,like signing a petition,running a net campaign to bring the matter to drug companies attention,which would help you to be there.

After so much you've done for us, i think we can atleast do the least,So plz let us know.

ZAINI.

I'm still laughing at the fourth option!

Andy, you forgot to add one that I had posted in the singapore thread:

I'd rather have Andy sent than myself

Its best if Andy can somehow attend the Singapore conference. These conferences can be very technical in nature and given Andy's knowledge on the subject I think he would be able to grasp most of it and able to question the presenters and represent the group.

I also agree with all of you. It will be really great if Mr. Andy can represent our beautiful family to the Singapore conference.

With Lots of Love & Regards

Dimple

I'm still laughing at the fourth option!

Me too! 

I'd love to go to the conference, but it's way too expensive.   

I just got an email from the Singapore conference administrator, telling me to register soon because

Please note that there are limited rooms available during this period.

Excuse me? If they can't guarantee hotel rooms, why is TIF holding the conference there? They already had to change the dates once because of lack of hotel space and now we are told to book very early or risk not getting a hotel. I am sure there are many people like myself, who cannot yet commit to going for one reason or another, but if we don't commit, we will be living in the street.

TIF loves to choose the expensive locales for their conferences, but it really does price the average person out of going. Hey TIF, how about choosing a reasonably priced location for a change? What about India, where there are 40 million carriers? Why limit these conferences to those who can afford them? Why not strive for a more inclusive conference in a place with sufficient, reasonably priced hotel space?

More and more I see why Ashish had so little respect for TIF. It's a shame TIF can't have more respect for the patients.

Very well said Andy.

It looks like TIF officials are looking for exotic places for their vacations more than patient welfare, may be next time they want to meet in the Caribbean.

Heheheh. Last time it was the vacation hot spot, Dubai. I agree 100% that the vacation and shopping potential of a location has much to do with the choices TIF makes. I was told by several patients that their local doctors went to TIF in Dubai, but were far more interested in the shopping than the conference. One patient told me that their group toured the Al Wasl thalassemia center and the doctors showed little interest in techniques that would improve the speed of transfusions, but were much more interested in quickly completing their tour so that they could go shopping!

I don't mean to detract from the Singapore thals, as they have as much right to ask for a conference as anyone, but TIF should have the responsibility of making sure that once they pick a locale, that it is supported and subsidized enough to make it reasonable for patients to go.

OH I SEE THE LIGHT......Finally I hear others saying what Ashish and I spoke about many many times before.

Yes TIF is all about TIF (the executive body - hmmmm perhaps only 2 members of that executive body  ) Anyway I have many thoughts which I wont go there because you can't do that on a forum which has eyes of the unwanted.

Andy is a voice for many patients that are not able to attend. I am more than willing to do what it takes to get him there, however we need to approach the drug companies such as Novartis (the biggest one of all) ApoPharma, Ferriscan - didn't we or don't we have one of their reps on our forum? We need to perhaps write to Derek (Singapore society president) and put Andy's case forward see if he can help out in anyway. I am sure they are all going to profit from this conference, so why can't they fork out what it takes to have Andy there for all the patients that wont be able to go, after all his our voice.

In regards to hotel accomodation Andy, if I tell you what happened when we went to Greece and Italy I am sure you wont be pleased. As usual accomodation was too expensive so we patients resorted to finding cheaper accomodation which was across Athens which took you about 1 hour traveling time OR some of us stayed at other neighbouring hotels which where down a steep hill. Patients with heart problems and other health issues had to walk this steep hill morning lunch and night to go back and forth to the conference. Why didn't we take a taxi u say? Well as soon as we called for one they said to us it wasn't feesabile for them to come that far for such a short trip. (work that out lol) ANYWAY in Italy the same thing happened, most of the patients stayed in rooms spread across the resort which was a good walking distance. Meanwhile back in the actual conference TIF members had to simply get dressed and walk down to the lobby area.

YIHAAAAAAAAAAAAAAAA for equality and patient respect NOT

SO come time now for Singapore there is a good handful of patients who can't afford to stay in the same hotel were the conference is being held so we have found our own accomodation, which is only a short walk from the conference centre. If you are thinking of going pleaes private me and i will direct u to the hotel.

We need as many people there as we can possibly get to Singapore. I totally understand it being so expensive, I have done it for the last 4 conferences now and they have always been over the other side of the world for me. I am blessed I am able to go however its nice to have something in my backyard for once. But without failure we all represent one another when we go and I am more than willing to do anything to help Andy get there. I wish all of our family here could go (that would be so crazy lol)

Miaki xx

Miaki,

Can you give me some guidance with contacting these companies? I don't really know who to contact and I also think it might help if others also contacted these companies to let them know what value I bring their companies by advising on the various treatments. Ferriscan has definitely done more business because of this group but the rep I knew previously and who I made a point of sitting down with at the Dubai conference, is no longer with the company. I do feel that in terms of the financial self interest of these various companies, that the help I give patients and parents in understanding the different tests and treatments and tips on tolerating the drugs, it is worthwhile to these companies having me help so many people. Providing me with the opportunity to attend the conference and continue to learn and afterwards apply the knowledge, can help these companies in the long run. They do not have the ear of the patients, the way I do and a symbiotic relationship can be of great benefit here. I hope we can make these companies understand that and contribute to my attendance in Singapore. I do take the conferences very seriously and am willing to bet that I attended more medical lectures than most of the doctors who were present in Dubai. I for one, cannot wait to hear the reports on the various trials that are beginning this year. I hope I can get the chance to do so.

We all wish TIF was a more effective organization and I would like to see much more contact between TIF and patients, but it isn't happening. At the very least, they should be directing people to where they can find proper care in their countries. I do feel that the Cooley's Anemia Foundation in the US is a more effective organization and commend them for having an active patient services coordinator who does help people find proper care. They also have a regularly updated site (thank you, Craig Butler) that keeps up on current events. TIF seldom updates their site, which is frustrating. The international organization should be one that patients can turn to for direction and that is not the situation. Maybe we need to demand more.

Hi,

Is there any way CAF can help you get to Singapore? Do we have a member here from CAF?

Miaki,

Are you definately going to singapore... if you are let me know...and if you want to share accomodation?

I want to go, but if I go and get a room of my own its expensive if you do share accomodation it works out much cheaper...

Let me know please
Smurf

Smurfette - Yes i am definately going to Singapore (providing all is well at the time with my family) I will keep you posted and notify you of any updates from the Australian contingent attending.

Andy - I am speaking with Novartis tomorrow so I hope to get some answers for u. In relation to FerriScan i know the gentleman u are referring too and yes he has left the organisation now. There were some difficulties within the business structure, however I have at the level of ownership, i will call them also tomorrow and chase things up for us (you)

CAF is great, I think Craig Butler does a wonderful job and he should be congratulated.

TIF ....dont get me started Andy ...lol    Anyway I will keep you posted but hassel me if i dont deliver please as u know i am forgetful sometimes, but i have been good lately

Miaki xx