Why Not????!!!!!

I just did a crazy thing, i wrote an email to Bill Gates explaining to him what is thal and how there are common grounds between thal and malaria ( since he is donating every year for finding a cure for malaria) and how there are trails that are close to find a cure but they just needs funds to cure a very harsh disease that is widley spread but globaly not known. I mentioned Andy,some statistics, Dr. Sadaline,  and how his trails are formal and each step is approved by FDA and asked him to help in funding especially that $3000000 are not a big amount for him.

I know that  this person has a staff to see these mails and even i read that many years ago, it is recorded that he receives 4 million mails daily but i thought it wouldn't hurt any way, why not may be luck plays a role here.

I was thinking of why shouldn't we send emails to all people who might donate explaining our cause. It annoys me a lot as i was discussing this with Andy  in Singapore seeing rich people spending millions and millions on luxurious staff and only $3000000 are difficult to donate for a noble cause. What do you think about this, do you think that it could lead to anything. I thought we spend part of our time writing online so we might address people  to donate.

I searched the net for his email and there was not a special one and definetly the one he personally sees is not availabel but i just sent the email on all possible emails that i found.

If you agree we do so, do you think of a certain way this letter should be written with or an informal one from a mother like the one i just did ( but from my opinion it lacked formal infromation about Dr. Sadalin, where he is, address, ...)

Let me know your feedback on this

manal

Manal,

What a great idea!!  Attempts like this are sure to make the difference!  I wish we were all located in closer proximity to one another so that we could attempt to put on some other types of fundraisers too! 

I hope Mr. Gates receives your email and decides to contribute to this cause.  What a difference he could make!  Not only that, it would encourage other rich people to donate to our cause too! 

This reminds me of Pat Girondi and what he is attempting to do.  If we all try we are sure to make a difference.

Way to go Manal 

Sharmin

Manal,

That was a great effort on your part,we have to do what ever we can do,not necessary that we'll get desired results,but still we have to fullfill our role,and who can be better for this then a mom to a thal child,what we go through on daily basis,only we know,so we'll do every thing we can do to help the cause.

Way to go   

Zaini.

Brilliant Manal. Really awesome.

I am sure you will get a reply on this. I think you need to move this post from here and make it like an idea's or something like that, in which we can  come up with idea's to come up with funding and also where it has to be channeled.

ALso one thing which we need to get in is the Global burden of Diseases, where all these big donation camps can also look for the research funding for all the related  genetic blood disorders or thalassemia.

What do u think?

Puja

 

Thanks my friends for your encourgement and replies.

Puja
I totally agree with but actually don't know how or what is the procedure of putting thal on the Global burden of Diseases, may be Andy can help in this.

What i am really doing is trying to find e-mails of famous people in the media, like Oprah, editor in chiefs of famous publications but the problem is that the emails you find are not personal, they are just what you find on sites and either they don't reach them or they are read by others but as i said before no harm from sending.

manal

Manal,

You just gave me a wonderful idea.  Perhaps we can write an article for a magazine regarding the challenges that thals face. 


Sharmin

Hello,
this is really great thing Manal, we must appreciate you for this.
Sharmin that's great idea to write an article on thala, I thouht that so, but i didn't..
we have to start from somewhere, doesn't matter we  get response or not (i believe we will surely get)
but atleast we are trying that's matter..
Really frns you are so kind and I'm Lucky that i have you..after talking to you i feel so relax
thanx

Thanks dear anie

Sharmin, that is great but how can we do this, i mean what is the access. Locally in my country, some articles were written but no known feedback. We have high illetracy and one article is actually not enough. I too have an observation that people don't act as long as they don't suffer from the disease.

What about the case in Canda and US, is it easy for someone to send articles??

manal

How about I write to MS Shobha Tuli Vice President of TIF. What do you think ? Will it help.

Puja, though i know that TIF are supposed to know that we need to be heard and that is not something new to them but i encourge you to do so.


Maryoom, thanks dear for your encourgement , we always have to try our best

manal

     Hi! Manal ! It's brilliant what you did I mean surely mr. Bill Gates would come to realize how important the cause is for us patients and the parents who have an offspring with the disorder , let's just cross our finger that may he respond to it soon..........

Another thing which we can do is may be draft a mailer and do the votes that it should get into GBD (global Burden of diseases). WE need to work together for this will all world wide communities of thal and societies, get online votes and actually send it to people in charge.

U know what - there are companies who actual pay money as well for patients( you must have got those forwards like my child is sick and this comapny  has promised to pay 5 cents per email so please forward it to 10 people or 20 people ). Therefore some amount of  money can be generated even while forwarding this mailer, but obviously not as much as how we can get out people like Bill Gates and OPrah.

What do u think this Voting mail will work? Shall we give it a shot.

Hi Manal,

That is great news, actually i did write to the bill gates foundation also about a month ago and the response i got was that their oganisation is looking that curing other problems in Africa so there was not really any joy there but i have written a letter which i plan to send out to various large businesses and i was even thinking of someone like Jamie Oliver.

If i can get him on board - he maybe able to help in the sense of cooking and diet for thal people and somehow reaching media, television - its worth a try

What do you think?

Shy

Puja and Shy

I think that all these ideas are great and we should divide ourselves into groups and START. Each group can work in one of these ideas and ask for help from the others if needed.

For example what i am working on these coming days are finding emails of those important people and sending them. Puja, i like this idea of voting you can start on it and see what you need to put in action and we can work in groups, same thing goes with Shy. So any one who has any good idea to help in global awarness of us and fundraisng, please post what you will need or your plan for achieving this goal and we can arrange it in terms of who can do what, cause we need to start. My idea is that locally we concentrate on awarness of the disease and globally we concentrate on fund raising for a cure. Hope i am making sense.

Thanks Lyanne for your wishes, i pray for this too

manal