TIF Conference 2011: who is going?

congratzz to all who have made their registration n going to attend the confrence .. .. best ov luck guyzz.

We'll report it all to everyone else; including you Umair.

thanx Dore . we'll b waiting for News n updates regarding that Conference ..

I keep in my mind I stay a bit longer away. Very illgal, I got classes, but I have followed very strictly my classes the past four years. I like your signature below your avatar. I would like to grown up again too!

Dear all,
 Very happy for those of you going for ths conf. 

However, I have an uncomfortable feeling abt the way each conference just seems to get costlier to attend,  more exotic in locations, and just plain out of reach of those of us who actuallly do want the information it provides.
If the aim of these conferences is to disburse information >to thals all over the world! to those who do need it!  ....and we so need it becoz we just do not have as many specialized doctors to rely upon  ...       and If that is the aim..I am failing to see it met?!?

 Our treatment (esp the older adult thals)  has been the pioneering efforts of our extremely committed parents.

If the aim of these conferences is to help thals with  new information ...I wonder if evryone agrees with me when I say it is not reaching those of us who really need it.  Our doctors are unable to attend it too.. in fact it depends on us, how we manage our own healthcare in countries where healthcare is our own and not the Govt's responsibility.

Even software for computers is designed to be userfriendly...can not these conferences be planned in the same way??  I am going to be told we will get the printed info or the booklets or download frm the computer but believe me it is just not the same!

Ppl who are actuallly so devoted to finding out info for thals and that does not have to be a thal,  someone like Andy should be sponsored every time without a second thought...and those of us whose priority was to actually attend the conference ...I don't mind if they hold it in the same place each time... smplace central, less costly, and smwhere where all ppl of all countries can attend it easily, freely and regularly. Just a dream eh? tut tut

Regards and best wishes to all.

 

I know what you say and it is true. I dreamt about it last night; that they finally went on webcast too. I hope that happend soon!
I think many of us receive those Newsletters from Cooley's Anemia Foundation? They got their seminars as websinar (sp?) and record it . In that way ever human being can look it up at any time. I think about the guy who placed a pc in public where a lot of street children were... Well, that leads us to another topic but, well.... I will catch such paper you get afterwards about how much you like it.

Isis, where are you from?

Dear Dori,

Nice to hear from you. I have read some of your posts and find you have such a soothing way of writing. 
I am from India. Being one of the older thals and having seen a lot of what goes on....I have to bite my tongue not to say evrything that I feel inside 

If we get that dream true it will be something. Not getting to attend these conferences is not  only about the information though....we get to meet and connect with so many people going through their different experiences with thal major from all over the world, at one place. There is no substitute to actually  attending the thal conferences.
So, let's continue to dream that they(the powers that be) realise and aim towards having International conferences which are cost-friendly enough to enable maximum thals frm world-over to attend; and  not make it like an achievement  to be able to get to a conference for us thals. A conference should not be a financial challenge, it should be a health challenge we concentrate on overcoming ... I could go on but  I am going to stop.
TC everyone.

To each of you who is going to this conference: please get in touch with me. I would love to meet everyone and not hear later that you were that too. I remember last year I recognized something in the elevator, but I was afraid to ask! My glasses broke 3 months ago so now I got ordinary old glasses again so not really a point of recogizing. If that is a world, but I will come up with something.

I better take my supplements now and concetrate me on my homework for Turkish.

Dore
PS we got "Antayla-weather" at the moment in Netherlands - I love it!

Good luck Dore, can't wait to hear from you when you are back xoxox
Manal

dori, the conference is next month, have fun!
please keep us posted will all the detaills.
i was reading the timetable with the topics and speakers, i hope they'll share great new stuff that will make us all so very happy! i'm glad you're representing us there! please don't forget anything... you're our eyes and ears there


enjoy turkey!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

good luck to everyone who is going to 12th international conference at turkey......

Hello Everyone, So far as I know I have emailed/contact each of you who have posted in this topic. Well, not Ayesha yet. I believe, have high hopes, I will recognize her (you) by myself. If you have not receive a message, please send me one! I would love all who I have met on these forums. Warm wishes, D

This sounds stupid but true. The hospital was overbooked for friday and I have a "free week" this week. What did we do or which choice did I have? I have set my transfusion for monday 9th May! Remember, my plane to Antayla departure at 8:30AM. Both are in Amsterdam, but I need to travel back home. So far, I have not find anyone who can bring me to Schiphol from Amsterdam and going by train is not an option. It's like topsport. I hope and wish for the best. I have considered to call tomorrow afternoon ( less busy) to see if there is another option, but honestly I really need this week to make and study everyone from the past week and two upcoming weeks so far as possible. Plus packing e.g.

If you believe this is very silly to do than please tell me and I will call.

Dore

This post will also be re-posted as a new post as this is a very important question.

I want as many people as possible to bring this up at every opportunity at the TIF conference. If you see Dr Perrine, please ask for her comments, also.

Many have seen the latest updated prescribing instructions for Exjade, along with the bold black box warning near the top of the instructions. This can be seen attached to a post at http://www.thalassemiapatientsandfriends.com/index.php/topic,1928.msg16165.html#msg16165  Many have expressed shock and fear after reading the black box. Obviously, when we talk about chelators, there is still much room for improvement. There is a chelator based on desferal that would require administration by IV once per week for about an hour. Imagine that. A Chelator you use only once per week. No jabbing yourself. No nausea from your oral chelator. No risk of the several dangers present with Exjade. This drug is called S-DFO (starch desferal). This drug went through stage one trials but the company was never able to secure the financing that would allow it to continue trials. As a result, the patent has now been turned over to another company as payment for a loan. This chelator is just sitting while this company hopes for a buyer. The researcher who developed this drug is more than willing to take charge for any new company that wants to buy this patent and move forward. You, the patients need this drug to be developed and made available.

What I am requesting from anyone going to TIF, is to look for every opportunity to raise the question as to why S-DFO is not being developed and what can be done to bring this drug to trials because the patients need a safe easy-to-use chelator. Dr Perrine is on our side in this and should be seen as an ally. She will be presenting the latest info about her hemoglobin inducing drug at TIF, so please try to talk to her. At any chelation talk, please bring this subject up. We need to get it back in the public eye. What happens in the realm of thal treatment should not be decided only by how much money can be made.

Hi,

I will be going to the conference in Turkey, me and my mum will be attending.  I have never been to any of the international conferences and therefore really looking forward to it, and excited to meet lots of people.

Not really sure what to expect though, but hope to learn a lot from it and also have fun.

Hope to see you there!

Andy, this is really a very important point. The more we have chelators, the more there will be compliance and safety. Hope our friends will discuss this point

manal