International Thalassemia Day

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.

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.

hey mustho
good luck on the research

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

Hi Shikha,

Thank you and thank your daughter for the needles. I should have a nice assortment for the kids over there.     

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

Hi Shikha,

Just wanted to let you know that the needles arrived today. Thank you and your daughter for your help. 

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

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.   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! 

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 8^th 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!

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.

I didn't even see this until now!  I'm glad you arrived there safely, Andy!  Have a great trip!   :hug

Wow! it's my frist time to hear International Thalassemia Day.

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?

hi,

" Happy Thalassaemia Day" to all ....

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...?

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         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.