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Author Topic: 2009 TAG Conference October 21-24, 2009  (Read 35091 times)
Lena
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« Reply #45 on: October 22, 2009, 12:05:54 AM »

Sharmin,

thanks for the update. Very useful indeed what the experts stated.

Andy,

right to the point as always. Thal gives the chance of survival nowadays. Thals would be fool not to take it!

Lena.
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Zaini
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« Reply #46 on: October 22, 2009, 12:42:02 AM »

Sharmin and Andy,

Thanks for the update,and i am so jealous of you guys  you are gonna meet finally .

Zaini.
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^*^Xaini^*^
Dori
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« Reply #47 on: October 22, 2009, 08:51:39 AM »

.  Many thals are still dying due to lack of compliance to chelation.  It was a real eye opener. 


I wish there was a way to tell my friend and friend's family this. I am still very worried about her health. No chelation, no regular transfusions. And diabetis (might be a family gene, but though!).
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Sharmin
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Little A


« Reply #48 on: October 22, 2009, 10:30:47 PM »

Hi friends, learned so much today my head is spinning!  I feel very fortunate to be here and
to have met people I had read about.  The are all very kind and eager to help.
It's been a great pleasure to meet Andy.  How can I describe what it means to
meet the person who turned things around for us with his guidance when we didn't know
what options were available to us-the person who saved our son's life - and continues to
help thousands of others in this way. 

I look forward to going through my notes so that i can update you all:)

Sharmin

I hope I can meet you too someday Zaini!!!  
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Sharmin
Andy Battaglia
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Will thal rule you or will you rule thal?


« Reply #49 on: October 22, 2009, 10:52:08 PM »

Indeed, it was great meeting Sharmin and Her husband. This is what makes it all mean something for me. I also had the pleasure of meeting Lena's doctor, who is a wonderful woman. We were also able to hear Dr Malik speak and yes of course, since sickle and beta thal are disorders of the same gene, her work will apply to thalassemia. There is so much to talk about and with the slow net connection at my hotel, I'll have to wait until later to continue. I will say that this is the most impressive assembly of doctors and researchers that anyone could ask for and also, there is so much work being done on behalf of thalassemics, so please don't ever feel that you are forgotten. You are in their minds constantly and it is you who they are working to help.
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Andy

All we are saying is give thals a chance.
Manal
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« Reply #50 on: October 23, 2009, 05:33:17 AM »

Sharmin, thanks for the update

Andy, thanks for your kind words

manal
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Andy Battaglia
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« Reply #51 on: October 25, 2009, 12:26:21 PM »

I wanted to make a quick note. I really spoke a lot to people about the incredible job our own Umair has done in reversing his iron load. It is truly amazing and an inspiration to all who hear about his accomplishments.

Great job buddy! A lot of people are very proud of you and are rooting for you as you now learn to have a real life. 
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Andy

All we are saying is give thals a chance.
nice friend
Thalassemia Major
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If I Can, Why Not You??... If I Can U TOO !!!...


« Reply #52 on: October 25, 2009, 02:22:21 PM »

Andy ,
   Blushing :


Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
Andy Battaglia
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« Reply #53 on: October 25, 2009, 02:27:51 PM »

Umair,

I am so proud of what you have done and absolutely had to share your experience.
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Andy

All we are saying is give thals a chance.
nice friend
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If I Can, Why Not You??... If I Can U TOO !!!...


« Reply #54 on: October 25, 2009, 02:41:22 PM »

Andy ,
i m happy if the people who think that iron overload isn't reveseable are changing their minds just  bcoze of knowing me ... so, feel free to share .. i feel soo much glad when i se someone is going to start chelation just by seeing the difference in my colour, my health & my life style ... so , its always make's me happy that my thal friends start's chelation ....

Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
Andy Battaglia
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« Reply #55 on: October 25, 2009, 02:49:51 PM »

Umair,

I must also report that there has now been observed a reversal in some glucose tolerance in those who remove iron from their pancreas. So please continue to be a faithful chelator and work towards getting all the iron out of your organs. Your diabetes may be much easier to control once your pancreas is clean.
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Andy

All we are saying is give thals a chance.
Sharmin
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« Reply #56 on: October 25, 2009, 03:22:42 PM »

Umair,

We were very proud to talk about you in New York:)  What you have accomplished is a strong example of what this group can do.  It shows what Andy's work has done for thals.

We got home this morning,  very exhausted and overloaded with information.  My husband and I are both very happy to have met other thalpals - and some of the most wonderful doctors in the world.  We were blown away by how approachable they were!  

What really took our breath away was Andy's work.  His persistence that goes beyond this site - he worked tirelessly to get everyone help - to connect patients and families with doctors and with one another.  Andy was always two steps ahead, somehow knowing who would benefit from which doctor.  He got answers for us that we would not have received otherwise.  We have also begun setting up various appointments for tests and consultations that will address many of our concerns as little A grows.  Samir and his wife will probably be overwhelmed for a while, I think that we all remember that feeling.  But they are going to benefit greatly from the connections that Andy has created for their family.  

It was wonderful meeting hopefulmommy and her beautiful daughter, Bostonian's family,Narendra, Miaki and the many others.  Little A is very jealous that he did not have a chance to meet all of his heros.  You all are even more amazing in person!!  We send our best to you all and hope that we meet again soon.  

We have much more to share, I will post again once I have had some rest.  It is so good to see the kids again!

Love,

Sharmin
« Last Edit: October 25, 2009, 06:20:27 PM by Sharmin » Logged

Sharmin
Manal
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« Reply #57 on: October 25, 2009, 04:31:28 PM »

Quote
Andy was always two steps ahead, somehow knowing who would benefit from which doctor.  He got answers for us that we would not have received otherwise

Yes Sharmin, i saw this in Singapore too. Andy is one of a kind. May God bless him and his beloved for ever


Quote
Little A is very jealous that he did not have a chance to meet all of his heros.
Me too Sharmin
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Bostonian_04
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« Reply #58 on: October 26, 2009, 11:19:21 AM »

Well .. after a lot of maybes my wife and I finally managed to attend the TAG conference on Saturday ... it was a long grueling day for me (driving in from Boston early in the morning and driving back in the evening), but it was worth every second and I am glad that we were able to make it, albeit only for one day. I am sure that the first three days of the conference were chock full on info relevant to all of us out here, as was the day that we attended, ... and I am eagerly waiting for the updates from Sharmin and the others who had attended those days. Till that time I am keeping my busy devouring the abstracts of the presentations that were made during the conference.

It also gave us the opportunity to put faces to the names of the "extended family" that we have in here ..... Andy, Sharmin and her husband, hopefulmommy and of course, Narendra, who I had met before in Boston. Meeting Samir (hope he joins here soon) and hearing about her infant daughter took me back to the days when I was exactly in this situation ..... looking desperately for answers for our daughter and for ourselves ...... my wife and I were lucky to have found you all .....


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Sharmin
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Little A


« Reply #59 on: October 27, 2009, 06:25:57 PM »

I am so glad that all of you came out.  It was so nice to have met you all!  It was also nice to have our own little thalpal group at the conference   Everyone was so happy to see each other and so keen on getting good information. 

It was also seeing some of the older thal patients.  We met numerous patients in their late fourtys and fifties!  We met a very distinguished gentleman who was 56 years old.  Many of these older thals were married and had children.  Most surprising to us was meeting a doctor from Oakland who has been taking care of lil A for years.  She used to do his SQUID tests.  We were shocked to learn that she herself is a thal major!  She is a beautiful and very healthy 37 year old woman. 

Sending heartfelt and happy wishes to all of you,

Sharmin
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Sharmin
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