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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55105 Posts in 5866 Topics by 6148 Members
Latest Member: Disead

This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: 2009 TAG Conference October 21-24, 2009  (Read 30883 times)
Sharmin
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Little A


« Reply #30 on: October 01, 2009, 01:59:57 PM »

Narendra,

Thanks a lot for doing that.  I think that it can be very helpful to some of our members.

Andy,

I agree with Narendra.  We cannot thank you enough for making this trip for us.  I know that it entails a lot of planning sacrifices on your part.  Our members have so much to gain from your attendance at this conference and for this we are all eternally grateful. 

Sharmin
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Sharmin
Lena
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« Reply #31 on: October 02, 2009, 12:00:23 AM »

Yes,

huge thanks to Andy!

Lena.
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Zaini
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« Reply #32 on: October 02, 2009, 12:41:27 AM »




                   

Thank You Andy,words aren't enough.

And Lena,others have also told you that,but it doesn't stop me from saying it again that you look beautiful .

Zaini.
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Lena
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« Reply #33 on: October 02, 2009, 01:13:29 AM »

How can I thank you, Zaini? and how can I thank you all for your support?
I am happy that I've met you through this site!

Lena.
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Sharmin
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Little A


« Reply #34 on: October 18, 2009, 01:43:16 PM »

Getting ready to leave for the conference - looking forward to learning and meeting friends.  At the same time hoping that Salman will pull through because it is hard finding strength knowing what he and his family are going through.

Sharmin
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Sharmin
Manal
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« Reply #35 on: October 18, 2009, 07:12:13 PM »

Good luck Sharmin and take care

manal
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Zaini
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« Reply #36 on: October 18, 2009, 09:02:57 PM »

Bon Voyage
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Sharmin
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Little A


« Reply #37 on: October 19, 2009, 06:57:39 PM »

Thanks friends 
I am leaving tomorrow morning.  I will try to login from there whenever possible. 
Take good care friends - I look forward learning new things and sharing them with all of you. 

Please PM me if you are going to be there and if you would like to meet up with my husband and myself at the conference. 

Sharmin
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Sharmin
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« Reply #38 on: October 20, 2009, 08:53:46 AM »

Enjoy the conference! I've heard from friends it's always nice to visit such international conferences.
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Bostonian_04
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« Reply #39 on: October 20, 2009, 02:31:01 PM »

Andy, Sharmin: I am so glad that you guys are attending the conference. Andy, special thanks to you for taking out time from your busy schedule to be there. We really wanted to go but unfortunately we can't. so, will wait eagerly for an update from you.
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Sharmin
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Little A


« Reply #40 on: October 20, 2009, 08:51:44 PM »

Bostonian,  I wish we could have met you.  We will try to accumulate as much info as possible.  We are in NY today.  We will be at the conference beginning tomorrow night to listen to the welcome remarks and such. 

I'll update as soon as we learn anything,

Sharmin
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Sharmin
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #41 on: October 20, 2009, 09:07:01 PM »

I'm sorry you won't be able to make it, Bostonian. I was looking forward to meeting you.

I won't be online during the day time much, if at all, but will try to catch up after Saturday.
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Andy

All we are saying is give thals a chance.
Sharmin
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Little A


« Reply #42 on: October 21, 2009, 08:05:48 PM »

Hi friends,

I was fortunate to attend the opening comments today.  There was a consensus among speakers that how well a given patient will do depends on compliance.  There have been many advances in thal care - mostly in the form of chelation and yet the availability of the chelators means nothing to those who do not use them.  Many thals are still dying due to lack of compliance to chelation.  It was a real eye opener. 

I hope all of our thals will chelate!

Sharmin
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Sharmin
Manal
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« Reply #43 on: October 21, 2009, 08:19:38 PM »

Thanks Sharmin for the update. I am egarly waiting for more updates my friend.

Hope everything is going well there, enjoy and take care

manal
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Andy Battaglia
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« Reply #44 on: October 21, 2009, 11:08:00 PM »

I arrived tonight and am looking forward to meeting Sharmin in the morning. And attending the conference, of course.

Sharmin,

What you have said about compliance is absolutely true. The gifts to stay alive are there for thals but many choose to either not use them or not comply in a way that will keep them healthy and alive. There are many people who are members of this group who fall into these categories and really, for the most part, there is no good excuse. There are a variety of chelators to use today, so why not do what it takes to stay alive and have a decent life? Thals need to lose the excuses and find the strength to live life just like everyone else. Times have changed and the life of a thal can be pretty darn good. Embrace that life. When things seem hard, be tough. Be strong. Be thankful for all these great doctors and researchers who have given you a chance when nature did not. Many make excuses about their cultures not accepting thals. Well...change your culture just like Maako and Akka have by getting married, something that was thought to be impossible in Maldivian culture. Realize how important YOU are and how much your own efforts can change things. Lead by example. If Maako and Akka had waited until their culture said it was OK for thals to marry, they would still be single women. Nothing changes until someone changes it and once change begins, it is amazing how fast things can change.

If you choose excuses, you will not survive. If you choose to comply with your treatment and make it as much a habit as eating and drinking, you will find your life to be pretty normal. What more can anyone ask? Have the will to survive and the belief that you will. The alternative just isn't a good one.

All we are saying is give thals a chance. Thals, when you are given that chance, just take it.
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Andy

All we are saying is give thals a chance.
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