Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Andy Battaglia on July 24, 2009, 04:41:47 PM
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Registration information for the upcoming thalassemia conference in New York City is now available. The announcement can be seen at
http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=181:2009-tag-conference&catid=34:tag&Itemid=54
Registration is available either on a per day basis or for the entire conference.
See https://www.webassociationmgmt.org/nyas/events.jsp?itemID=646&errorcode=&hideLeftNav=
The lineup of doctors and researchers who will be speaking at this conference is simply amazing.
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Thanks for the info Andy,would you be attending this conference?
Zaini.
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I hope to attend this conference Andy - hopefully we will see you there!! Zaini, wish you could be there too!
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I wolud love to attend too!The symposium has a great program wish I could be there even for a day.
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Sigh. I still cannot commit to going for more than one day. It's become very hard for me to get away from work other than on the weekends. This conference's guest list absolutely blows away the Singapore conference. This is how it should be. The top people doing the research will be there, instead of a bunch of doctors talking about the work of someone else. If nothing else, I will make it for Saturday and if there is any possible way, I will be there Thursday on. Wednesday will not be possible, but I don't think much is really going on then.
Patients and parents, please be advised that the bulk of this conference will be medical discussions with much technical information. I know many people are up to it, but others may find the information beyond the reach of their understanding, due to the amount of medical and technical language involved. I will say that Puja and Manal handled this stuff quite well in Singapore, so for those who do have some understanding of the technical side of the thalassemia discussion, you will get a lot out of it. On Saturday, there are the TAG sessions that will be oriented towards patients, so everyone will be able to get something out of that.
Kudos to the organizers for a truly incredible group of speakers. :thumbsup
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I really wish i could attend this wonderful conference. The lectures are so interesting and there are many new topics especially about gene regulation and the role of nutrition in thal management.
Any body knows if these lectures will be published or luploaded on any site????
manal
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Just booked our tickets! Hope to see many of you there. Manal, I will post if I hear anything about the lectures being uploaded or published. I wish you could be there too.
Sharmin
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Dear Sharmin,
I'm really glad that you are going. I wish that i could be there too.. But it's ok...as long as you kept us updated on the topics..
Nur
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sharmin sis,
glad to hear from you that you are attending,...
hope that you will update us shortly after attending
well i m thinking to go india will it be gud to attend
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Thanks Sharmin, :hugfriend
I am sure you will enjoy attending the lectures and you will get lots of information, god luck :wink
manal
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My attendance at the conference is looking less likely. :sadyup Right now, Saturday looks like the only day I can possibly be there and I don't know if it's worth the expense for only one day.
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Andy, I hope things can change and you will be able to attend :-\ ,
manal
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Andy,
I really hope that you can attend, you will comprehend more than any of us. I really hope that things work out and that you are able to be there. I think that you will also like meeting all of the wonderful doctors that will be there. We would also love the opportunity to finally meet you in person.
Sharmin
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OH :( I hope things will work out in your favor Andy.
Zaini.
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good luck Andy ... i hope everything will turn into ur favour n u will b there and attend the complete conference ( all days ) .. :goodluck
Best Regards
Umair
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I am going to TRY to go for at least Saturday! I hope to meet some of you if I make it!
Andy, are you going?
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EMommy,
I hope to see you there as well, my husband and I will be there :)
Sharmin
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Sharmin,
and this goes for anyone attending the 2009 Tag Conference: just check out on Ferriprox- Exjade combination therapy. I think this is a very important issue. (though I am not sure if it is going to be on discussions, as ferriprox is not around in the USA...)
Lena.
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Lena,
I'll definitely ask about exjade-ferriprox combination therapy :)
BTW, your picture is beautiful!!
Sharmin
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Thank you, Sharmin. You are very kind!
Lena.
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I finally registered.
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Thanks Andy :yahoo :yahoo :yahoo :yahoo :yahoo :clap
manal
:yay :thankyou2 :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl :clapcheergirl
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Now to find a flight.
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Flight within the same city :huh :huh Is New York that big :biggrin
manal
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New York is a state. New York City is about 360 miles away from where I live.
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Are you going to attend all days, Andy?
Lena.
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I'll miss the opening night and speeches, but will be there Thursday through Saturday for the important stuff.
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Hi ya All ,
its good to hearr that many of thalpals are going to attend that conference ,... i hope will bring alot of more latest and interesting info to that conference ... i eagerly waiting for you come back with alot of super usefull info and new studies, after attending that conference, ... i hope there they will anounce the results of Desferal+exjade study, and yeah, i m expecting to hear sumthing abt S-DFO ( Starch Desferal ) too .. so, m waiting eagerly ..... thanx alot guys for working hard and to gathering info for us thals ... :thankyou2
Best Regards
Take Care
Umair
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:veil :veil I am really excited that I will finally get to meet some of our members!!!! Please pm me if you are going to be there - I would like to meet as many of you as possible!!
Andy, I am so excited about actually meeting you in person as well!!
We will be in NY on Tuesday through Sunday - and I'll be trying to take as many notes as possible!
Sharmin
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Good to see a lot of folks getting together. I am glad Andy is going out of his way (he sure would have to adjust with folks taking care of his business while he is out) to make the trip to New York. Appreciate it Andy.
On another note, I am NOT promoting my friends business, but for those still looking for accommodation, I talked with one of my friend who owns a motel in NY City (Near JFK Airport) and is willing to give us a discount ($80 Single Bed and $100 Double Bed)
They provide a free shuttle from JFK Airport to the hotel and he mentions that there is a 30 minute commute (Bus and Train) to Manhattan (where the Event is). The hotel details can be found here.
http://www.hojo.com/HowardJohnson/control/Booking/property_info?propertyId=14939&brandInfo=HJ
Howard Johnson Inn Jamaica JFK Airport NY
153-95 Rockaway Boulevard
Jamaica, NY 11434 US
If anyone is interested, let me know and I will give you my friends information so that you can use my reference.
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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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Yes,
huge thanks to Andy!
Lena.
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(http://i191.photobucket.com/albums/z287/Mystic_Illusions_/13.gif)
Thank You Andy,words aren't enough.:hugfriend
And Lena,others have also told you that,but it doesn't stop me from saying it again that you look beautiful :hugfriend.
Zaini.
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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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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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Good luck Sharmin and take care :hugfriend
manal
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Bon Voyage :hugfriend
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Thanks friends :hugfriend :hugfriend
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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Enjoy the conference! I've heard from friends it's always nice to visit such international conferences.
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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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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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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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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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Thanks Sharmin for the update. I am egarly waiting for more updates my friend. :wink :biggrin
Hope everything is going well there, enjoy and take care :hugfriend
manal
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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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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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Sharmin and Andy,
Thanks for the update,and i am so jealous of you guys :rotfl you are gonna meet finally .
Zaini.
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. 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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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!!! :hugfriend
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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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Sharmin, thanks for the update :hugfriend
Andy, thanks for your kind words :hugfriend
manal
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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. :clap
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Andy ,
:) Blushing : :shy :cloud9 :wub
Umair
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Umair,
I am so proud of what you have done and absolutely had to share your experience.
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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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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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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
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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 :wub
Little A is very jealous that he did not have a chance to meet all of his heros.
Me too Sharmin :jumping
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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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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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It was an amazing experience at the NY Conference and kudos to Cooley’s Anemia for organizing this event.
I was so glad to meet the other thalpals. I met Andy again (but always a pleasure to see him). Taking time out of one's busy schedule and travelling to help thalpals is selfless and we are really blessed to have him. It was a joy to meet Sharmin and her husband. They are amazing and it was so good to see them in person. I missed seeing Little A, but I am sure I will see him some day (May be in one of the NHL teams playing hockey). It was also good to see Bostonian and his wife. Also, met hopefulmommy, who showed amazing quest for knowing what is best for her daughter. It was also nice to see Miaki and his son who travelled from Australia.
I was also glad to see so many others at the conference. The 56 year young gentleman, Sharmin referes to is indeed a fighter. He had problems when he was in India and the doctors had given up on him, but he took the fight and came over to US for treatment and that was 19 years ago. There were thal’s who came with their kids. Thal’s are now are getting the message - they can live longer like non-thals (if they comply with the treatment) and I could see a lot of enthusiasm in them. I also heard at the conference there are more than 400 reported pregnancies in thals and I am sure that number might NOT include pregnancies in a lot of countries.
The highlight for me was Dr. Vichinsky. I did only attend one of his session (which was on Alpha Thalassemia) and I was blown off by the way he presented himself. He talked about the seriousness of Alpha Thalassemia. It was a warning to the doctors (Remember – this was a session for the doctors), from what I see when he mentioned to the doctors in the room to worry about Alpha Thalassemia. He indicated the inter-relation between the genes needs to be understood better. With the growing number of mutations, more study needs to be done. I was shocked to hear that there are 1 billion people in South East Asia alone with Alpha Trait status. He talked about Alpha Thal needing prenatal diagnosis and the inability to test Alpha thal with clinical picture.
It was indeed a pleasure going to the NY Conference where I could meet so many and learn quite a bit.
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Hey anyone of you happen to take pictures :( ?