Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Andy Battaglia on February 08, 2006, 02:53:48 AM
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International Thalassemia Day is May 8. What are your plans?
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Oooh! We should put that on our calendar! :happyyes
I was thinking of having a blood drive. Not sure yet. :dunno
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Well, I've got some exciting news about international thal day, concerning myself. Unfortunately, I will not be able to attend the TAG conference in Vegas this year, but I got a heck of a good reason why not. I've been invited to the Maldives for International Thal Day on May 8th! And I am definitely going!
I met some of the Maldivians at the first group chat I ever attended and they have been friends ever since. Sometimes they feel that the world doesn't even know they exist but I never forget them and I am so excited that I will finally get to meet most of them...I just wish Maako and Umar who are both away at school could also attend, but I am very happy that Akka who lives in Sri Lanka will probably be there.
With 18% of the population carrying the thal gene in the Maldives, it is a huge problem there and I hope we can all lend a hand with education and encouragement. Please let them know that we know they're there and want to help them in any way we can. If anyone has thumbtack style needles they can donate, please contact me. And if anyone has any idea on how we can find them an economical source of leukocyte filters for transfusions, please, please let me know. This is an expensive burden for them and we are looking for any help we can get.
I can't wait to go and meet everyone! :biggrin
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Hey Andy,
I'm really happy for this. I'm sure your trip will be of great encoragement to all the thalassemics in Maldives, specially the elder ones. I really wish I could be there.
And if anyone has any idea on how we can find them an economical source of leukocyte filters for transfusions, please, please let me know. This is an expensive burden for them
Andy this is one of the difficult problem faced by thalassemics in Maldives. Thank you for mentioning this.
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Hi,
Is there any way that you can bring a PC or laptop there in the conf with an internet connection so that we can all join in via the Chat client on this fabulous site?
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I've been invited to the Maldives for International Thal Day on May 8th! And I am definitely going!
I met some of the Maldivians at the first group chat I ever attended and they have been friends ever since.
Salute, Andy! You are such a powerhouse for this group. :heartred
Look forward to hearing all about it.
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I'm so glad you are going, Andy! You so deserve it! :yahoo
You're awesome! :cheer
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hello
i am faizan from maldives and i am looking forward for that day
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Glad to know there is such an occation. :smile2
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This is good that Andy is going to attend the meeting at Maldives and one of the active members of this forum Mr Sajid Rauf's has said that if Andy could take a laptop there so that we people get the benefits of the meetings online.I appreciate Sajid Rauf's idea.
Irfan
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It’s really interesting, Maldives is at last on thalassemia forum, and Thalassemia is major problem. I have learned from Company in USA that some of you who are going to Maldives have collected some Sub Q needles to be taken to Maldives. We really appreciate for these help. Thalassemia patients in Maldives really need world wide support. We have over 500 beta thalassemia major patients who receive regular blood transfusions. Usually in Maldives we have directed donors either from family and friends, leuko depletion is optional for those who can afford bed side filters. I hope from people in this forum else where in the world we will get more support. I am Maldivian studying in North America, to treat thalassemia and doing research on thalassemia iron chelation.
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Since the first time I participated in a group chat at Thalassemia Patients and Friends, at Lisa's request, the Maldivians have had a special place in my heart. That day I met Maako, Niuma, Vittey and Shaneez, and they have been friends ever since. I have made many other Maldivian friends and am so happy that finally I will get to meet them face-to-face.
The world may have had a hard time finding the Maldives, but the Maldivians have reached out to the world and their friendship is drawing the world into them. They've got a big problem with 18% of the population carrying the thal gene and we need to give them all the help dealing with this that we can. It's been done in Cyprus and it can be done in the Maldives. I challenge the international community and the international organization to make this a reality through testing before marriage programs. Let's get it done.
And I'd like to remind those in the US who have given up pumping that I am looking for a working pump in good condition to take to a young girl in the Maldives. Your help would be greatly appreciated. Please message me if you can help.
Thank you,
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can anyone tell me since when International Thalassaemia Day are being celebrated? :huh and the story behind this celebration?
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Hi Andy, I have learn fron Nofolk Medicals in USA that you are planning to visit to Maldives. I am a Maldivian here in Canada,These friends you have mentioned Vitte, Niuma and Maaco they are nice kids, I know them all, as I have worked in thalassemia centre for some time.
At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.
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At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.
Hi,
Please do tell us soon. I am anxious to get away from all that needle pricking no matter how may pills I have to take or drink what is unpalatable!
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Hi Sajid, its still in research level, but we have great hope, alternative means, we are trying to improve the mechanism of iron chelation. May be oral tablet or single injection, lets hope this will work. The disadvantage of Desferal is though its very good iron chelator, its half life in blood is very short, thats why we have to give subcutaneous injections for quite long time. We are trying to find a shuttle chelation system, hopefully this will work far better. I will let you all know more once I am convinced more on this research.
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Hey Andy,
Thank you alot, for the interest you have on the thal issue in Maldives. We really appereciate it.
Hey Mustho,
Nice to see you in this forum. And also happy to hear about the research. Hope for the best in your research.
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hey mustho
good luck on the research
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Hi Andy
Today my daughter has mailed some needles to you for the Maldives get together. We hope some one will be benefited by them. I wish I could we could do more. My daughter is on the Exjade just for 2 months now, and so she still has to wait and watch if she needs Desferal again. Otherwise she would have sent you her pump and some more needles.
Please let me know once you receive them.
Shikha mitra
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Hi Shikha,
Thank you and thank your daughter for the needles. I should have a nice assortment for the kids over there. :smileblue
And thanks for reminding people that I'm still looking for a working pump to take with me. Time is short, so contact me ASAP if you have one.
Thanks,
Andy
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Hi Shikha,
Just wanted to let you know that the needles arrived today. Thank you and your daughter for your help. :biggrin
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Hi Shikha,
On behalf of all thals of Maldives, i would like to thank you and your daughter for the needles. Your help is highly appreciated.
Take care
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I'd also like to thank Faye for her contribution to this effort and also to Norfolk Medical and for their kind donation of needle sets and to Jordan Dalton, who made it all happen.
I'll be leaving Wednesday for Dubai, where I'll be able to see Mam and Danny and my little buddy Teddie. After that, I'll be headed for Male and whatever surprises are planned there. :wink The date there has been changed to May 12 for Thal day.
I'll try to check in a bit throughout the trip and maybe do a post or two if I get the chance.
This is pretty exciting! :biggrin
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Hi,
Guess what today I read a small news in the paper that Thal. Day is also being celebrated here in Islamabad in Shalimar hotel on 8th May. I wonder why they announced it so late only three days before the event?!?
So buddy, I hope that you have reached your destination safe and sound.
Take care!
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I arrived safe and sound in Dubai and am currently at Mam and Danny's house playing with Teddy.Off to Maldives in a few days.
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I didn't even see this until now! I'm glad you arrived there safely, Andy! Have a great trip! :hug
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Wow! it's my frist time to hear International Thalassemia Day.
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T oday is dedicated to all those with Thalassaemia all over the world.
H ow they inspire us all, no matter how difficult the struggle.
A ll who live with this, teach us lessons each day
L ive life to the fullest, have fun, be happy
A nd not let any day pass with regret.
S haring experiences, helps tremendously and does not make us feel alone.
S mile, have strength and survive,
A ll who live with this know each day is important and not to be wasted,
E ach and everyone of us can learn from people with thalassaemia
M aybe one day there will be a cure,
I for one look forward to that day.
A day in a perfect world wouldnt that be nice
D aydreamer is what i am.
A person without dreams is like a dog without a bone.
Y es today is International Thalassaemia Day, lets celebrate life and never forget those that have gone before us, that remain in our hearts forever more.
By Isabella Agius May 8th 2006
International Thalassemia Day is May 8. What are your plans?
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hi,
" Happy Thalassaemia Day" to all .... :woot
Well...i just came back from a seminar in conjunction with the world Thalassaemia day celebration in KL. This is the second time Malaysia organizes this event. I had such a wonderful time and met a lot of wonderful people that did a great job in fighting for better treatments for us Thals. Compared to the first event...the turnout for this time has tripled! A great suprise for all.
:smile2
I wonder how's Andy doing...?
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Hi Nur,
I'm doing well. I stayed at Mam and Danny's for two days before getting out of their hair and into a hotel. They are such wonderful people and wanted me to stay but I hate to impose on people and felt that two days was enough.
I am so glad to hear that thal day went so well there this year. I know you must be :biggrin hehehe
I will go to Maldives in two days and I hope that things can be happy there. I will explain my concern in my next post.
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Dear Andy,
Please say hello to Mam an her family for me... i wish i could be there too.. :sadyup
:heartred Nur :heartpink
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T oday is dedicated to all those with Thalassaemia all over the world.
H ow they inspire us all, no matter how difficult the struggle.
A ll who live with this, teach us lessons each day
L ive life to the fullest, have fun, be happy
A nd not let any day pass with regret.
S haring experiences, helps tremendously and does not make us feel alone.
S mile, have strength and survive,
A ll who live with this know each day is important and not to be wasted,
E ach and everyone of us can learn from people with thalassaemia
M aybe one day there will be a cure,
I for one look forward to that day.
A day in a perfect world wouldnt that be nice
D aydreamer is what i am.
A person without dreams is like a dog without a bone.
Y es today is International Thalassaemia Day, lets celebrate life and never forget those that have gone before us, that remain in our hearts forever more.
By Isabella Agius May 8th 2006
That was brilliant! Well done! :heartred :clap :heartpink :thumbsup
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Hi Andy hope you will have a nice time at Maldives, I am sure you will meet thalassemia kids there who has been waiting to meet you.
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hi
andy is haveing lot of fun with su.and he is haveing a GOOD time :yahoo :yahoo :party :party
-faizan-
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T oday is dedicated to all those with Thalassaemia all over the world.
H ow they inspire us all, no matter how difficult the struggle.
A ll who live with this, teach us lessons each day
L ive life to the fullest, have fun, be happy
A nd not let any day pass with regret.
S haring experiences, helps tremendously and does not make us feel alone.
S mile, have strength and survive,
A ll who live with this know each day is important and not to be wasted,
E ach and everyone of us can learn from people with thalassaemia
M aybe one day there will be a cure,
I for one look forward to that day.
A day in a perfect world wouldnt that be nice
D aydreamer is what i am.
A person without dreams is like a dog without a bone.
Y es today is International Thalassaemia Day, lets celebrate life and never forget those that have gone before us, that remain in our hearts forever more.
By Isabella Agius May 8th 2006
That was awesome, Bella! Great job! :clap
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Hi everyone,
Just want to say I am still alive. Am at Dubai airport waiting for the 14 hour flight to NYC.
I'll be reporting about the Maldives soon. Just would like to say that the thals there are such great people and that I am missing them all so much already.
People, these friends need all our support and friendship. Please let them all know how much they are appreciated and whenever possible please find a way to support and help them.
I'll have plenty to say later and right now I am feeling very humbled by their attention. They are the best!
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hi andy
we alll miss u toooo. it was a great 4 days.
-faizan-
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Faizan, my paisan. I miss you all so much and want to come back as sooooon as possible.
Everyone in Maldives, keep th faith and chelate.
Love you all,
Andy
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Hi everyone,
Just want to say I am still alive. Am at Dubai airport waiting for the 14 hour flight to NYC.
I'll be reporting about the Maldives soon. Just would like to say that the thals there are such great people and that I am missing them all so much already.
People, these friends need all our support and friendship. Please let them all know how much they are appreciated and whenever possible please find a way to support and help them.
I'll have plenty to say later and right now I am feeling very humbled by their attention. They are the best!
That's really neat! I hope you had fun. Waiting to hear about it all when you get back. Have a safe journey home!
Take care!
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I'm baaaaaaack. :biggrin
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Welcome home!, buddy. :flowers :party
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Andy.... I miss you sooo much... Whaaaaaah!! :quiver :'( :wah
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Welcome back Andy
Hope your trip was good...
Talk to you soon
Smurfette
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Shanyz,
I really miss everyone so much. I wish you all had really kidnapped me. Next time, do it for real. :biggrin
I'll say hello more when I get some sleep. Can't adjust back to this time. Less than 5 hours sleep and wide awake but soooooooo tired.
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Hi Smurfette,
Thanx. The trip was the best. And I hope everyone will now want to meet all these guys and gals from Maldives cause they are really such wonderful people and they would like to know way more about treatment elsewhere.
Talk to you on MSN very soon.
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opssssssssss
we are vvvvvv sorry we forgot some one to include in this
SHILPA we missss u 2
-faizan-
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Hey Andy
Welcome back hun. I am sure you had a good time and you accomplished some great work over there. Also a job well done to Shilpa for attending and its great to see more thals sharing their stories with the ones that need the guidence and support.
I do apologise for not being able to attend. I guess the time has come to come clean on why I didn't go to the Maldives. I was unwell and needed to attend to myself with some health issues relatiing to thal. Last year I did 4 long flights to the UK and Dubai and it took a toll on my poor body. I needed time back on ground level to adjust and also time to start looking after myself since I let myself go whilst caring for my ill husband, working, travelling to international conferences, meetings and raising a family.
So I do apologise to the Maldivians for not coming. I would like to thank Mr Zuhair for inviting me and I have sent my apologies to him but I do promise once my health is sorted out I will be there to meet you all.
Keep your chin up and think positive. Never let anybody tell you, you can't do anything as the world is your oyster.
Miaki
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Hi andy I am silky from india I am 19 yrs old patient of thalassaemia and diabeties I want to make friends bcoz I am not going school I dont have friends and also want to attend confrence and all activities thalassaemia day there was any programme in maldives please can I also come bcoz I have never gone in any thalassaemia conference before If there was ant programme please invite me I really want to meet you I want to see maldives also it was so costly
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Hi Silky and welcome to the group,
I remember you from the MSN group. Where are you located in India? Is there a thalassemia association locally? It helps to belong to the associations if you want to get some sponsorship to conferences. It's also a good way to make friends. :smile
Come visit our site more often and I am sure you will make more friends here.
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I am silky 19 yrs old partient of thalassaemia and diabeties please uncle email me in heramba11@gmail.com
bye I have so many problems I want to ask you bye andy uncle