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Inducing Fetal Hemoglobin Production in Beta Thalassemia

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Christine Mary:
WHAT IS TIF?

Andy Battaglia:
Thalassemia International Federation
http://www.thalassaemia.org.cy/

An organization that should be doing far more for patients than it does...in my opinion.

Kathy11:
hello Christine.
In reading all your recent postings I can amphatise with your predicament .I do acknowledge that you want to do your part to stop or prevent the disorders that affect lots of lives around the world.

1. I would suggest that you take time to breathe and think what is your priority right now.
    Lauryn needs all your attention and suport most of all.

2.Learn to ignore the negative and very damaging remarks about your choice. You and you alone knows what is best for your family.No one has the right to vilify you.

3.Assist your daughter in getting the best medical care she needs right now and continuity of it.
Maybe you need to build up strength from knowing that there are lots of young adult here that was once a  baby like Lauryns and they have made it up to now ,and they are achieving thier goals dispite of thier difficulties.

5.We all need to believe that there will be a cure for thal,this ,will able, all of us to move forward.
6.Then, when your daughter is stabilized,you will be in a better position to think clearly and assist in finding a solution,for all other sufferers.
Please dont get cross with me I'm only trying to put the situation into prospective ,in order that you can move forwards ,I wouldn't want to see you loosing time jutifying as to why you made your choice in your life.
Good luck you can only do the best you can.
regards Kathy

§ãJ¡Ð ساجد:

--- Quote from: Andy on October 03, 2006, 09:35:51 PM ---We can't sit and wait to be noticed. It won't happen. We have to make noise if thal is going to get on the radar of those who can make things happen. TIF isn't accomplishing this so maybe t's time we look for other ways to make it happen. We live in the media age and savvy people will find ways to be noticed. Let's make it happen.
--- End quote ---

Way to go Andy! :cheer

We definitely need to move up from this forum where someone has to come and find us; to something that can make our voice heard mandatory globally.

Guess what? All the bad things in the world is getting all the global attention which should not happen in the first place while important issues aren't being addressed at all. Maybe we need to play bad too? :plot :evilplan

Naaaah! We can't do that! But we CAN access the path which these baddies follow to get noticed. I'm talking about serious T.V and paper coverage.

Christine you did a good thing to mail Oprah. I would however suggest to mail the news channels (shows) that Thal. needs to be addressed globally and there is a cure for Thal. which is only possible if everyone digs in like they are doing for HIV and Hepatitis.

This is something that TIF or other Thal. associations should do! I guess it's time we make our own Thal. association with an array of global volunteers to access their local media.

I just hope my ranting comes true one day! :pray

Take care, Peace!

Christine Mary:
Sajid,

Its officially done.I took your advice and I wrote every news station in Phoenix regarding Thal.and raising awareness.
I understand I should bide my time and focus on Lauryn, but since I cant do anything to help her at THIS PARTICULAR MOMENT, I am using my time to spread the word. I will not sit back and do nothing if I can help it. Who knows, maybe being a P.I.T.A. will get Thal some recognition for once.
If you have any other suggestions,please let me know. I dont mind, doing all of the dirty work :evilplan!
lol, tell me who to write, and ill take it from there!
I promised myself and Lauryn I will do EVERYTHING I can, to help Thals and their families.There's no better time to start than RIGHT NOW! :waiting :hissyfit
christine

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