Why Not????!!!!!

Manal,

I am thinking about working on the magazine article....as for my writing skills hmmmm - maybe I'll need someone to help me out there! 

Sharmin

Someone like Oprah and her promotors are likely to pay attention to something if it is brought to their attention repeatedly. 
We have over 1300 members, if each of us took some time to contact her she is much more likely to see this as a valid issue and she is more likely to air on tv or discuss it on her show.  People like Oprah will also be more likely to donate to charities if they are brought to attention more. 

Can you imagine the random causes that these people must receive letters for?  We need to select certain people - like Oprah - and then hundreds of people need to send her letters - that is more likely to get her attention.  While we are at it lets hit up Dr. Phil too...

I have thought more about submitting a magazine article too.  Perhaps it can feature a few cases - and we have some terrific contacts who can offer medical excerpts to the article.  We should also involve Pat Girondi as it may help his efforts too.  I will try brainstorming a little more today to see what else we can do. 

 You are all doing a great job - let's keep generating ideas!!   

Sharmin

ok Manal

I will discuss the voting scene with a few people and Andy then draft a mailer. I think we can get this rolling.

Lets pray for the best.

Luv

Puja

Okay that is great so to assign our errands

1- Sharmin will prepare the article for the magazine
2- Puja will take care of the voting
3- Shy is working on letters for business companies
4- Me, will  prepare an email that will be sent to all possible people according to the availability of there address and emails

PS. After writing  my email, i will need to post here because i need your agreement on the content and will need your help in correcting any sentence structure or any thing you find that should be changed ( excuse me as i feel this is better especially that English is my native language and we need to make all the members send it to the same address so that the receiver feels that there is a ''number '' of people who are in need for recognition)

I hope i will finish it in a couple of days and i will keep updatig you.

Please if there are any other ideas, lets discuss them

Love you all

manal

Sounds good Manal:)

Sharmin

You guys are doing a great job  anything i can do to help? the dumb one ? 

Zaini.

ok gr8, I will liase with all the woldwide communities associated with thal for the votes. There is one thing which I find difficult though when we are forwarding it again and again you know there is a cursor mark(>>>>>) which keeps on adding, do you understand what i mean. This makes the mail very un attractive. is there a way to work around it.

Manal - i read your cancer forward, thanks for that. However one problem when we receive this kind of valuable advice then also   people tend to delete even before reading. Sharmin /Manal, we should all come up with something very simple but catchy. Also Manal your idea is a good idea to get a lot of advice from our friends here for the mail. I will use your mail as well to all the people as an introduction and ask for votes.

I request all thal pals here to give us more ideas on how to get across straight to the point and how to make it so catchy that people donot delete it.

Also can someone advise me here, in terms of talking to the comapnies who pay 5 cents per forward( I 've heard), which comapnies can we target.

Also Guys, is it too late to write to Barack Obama. No harm in sending a mail? What do you think thalpal's in US ??

Dear thal pals,

My understanding is that this effort is toward increasing awareness - and the encouraging these people to donate funds to existing thalassemia charities.  In my article I hope to list some charities that people can donate to including encouraging people to purchase Pat Girondi's CDs toward the Errant Gene gene therapy trials.  Also, contributions to charities geared toward helping thal/ sickle cell patients abroad. 

Let's make sure that what we have a proper and sound framework for doing any such thing before getting started, we don't want to break any rules.  We need to find out what the rules are first. 

Talk to you all soon,

Sharmin

Also can someone advise me here, in terms of talking to the comapnies who pay 5 cents per forward( I 've heard), which comapnies can we target.

This is a pure spam thing. there is no company that gives out 5 cents for mail forwards. Please do not think those are real stories.

Puja,

I know what you mean by the  (>>>>) but actually i don't know how to fix them.


Sharmin,
When i first sent my mail, i meant to donate the money for the gene therapy group led by Dr. Michael Sadaline and the problem i had was that i didn't know the contacts of the doctor or under which organization and i am not sure whether Dr. Sadaline group is the Thalagen or not. Andy please advice on this and if you have their address where they can receive donations please post it..

However working on thal organizations sounds good too.

I think we need to have a list of contacts( address, emails ...) of places that receive donation to include in the magazine articles or forwarded emails.  I mean when we send emails to famous people for example we should include the address where they will send their donation .

Zaini, i think you can help in finding those address or mails of important people if you can

Narendra, thanks i didn't know that these companies don't exist

One more thing:

What should be written that makes the receiver believe that mails are not a spam and that we have a real cause.  I say this because i am sure that many of us had received a lot of mails asking for donations, money and so...

Andy, Does Dr. Sadaline had a formal bank account that receives these donation so who ever want to donate feels that everything is official

manal

Sharni, yes we really need to start sending out things only after we have all internally discusses and approved. Right frame work is really important. lets stream line this work properly.

1.We are working towards 2 causes here, first to donate money to the research team which is working for a cure  for gene therapy which will cure thalassemia. WE need to identify exactly whos is doing what for the research of thal. So that when we talk to people we are talking facts.

2. Secondly to get thalassemia in GBD so that people like Oprah and Gates foundation know about thalassemia and donations can be expected. Our voting email  will describe what is thalassmeia and how each married couple should be tested and if there is one carrier, they shoudl go in for DNA to rule out silent carrier(easiser said than done, costs are high in countries where it is not done in Govt hospitals). Our voting email will ask thalassemia to be included in Global burden of  should gather votes in getting thalassemia in the Global Burden of Diseases. For this I plan to contact all the members of thal  registeries world wide and all communities related to thal to gather votes.

Narendra - if those type of emails are spams then y they are sent on the first place???wht good it does to anybody in forwarding it across to million people. U understand technology better than me, so please advise.

Also Narendra can you please advise me how to work around this >>>>>>>>>>>> problem. Can we do something?

Hi ,
WE have to tell those people that, they have to think about thalassemia and its cure before it become as GBD ... and for the e-mails aadresses tell me the name of the persons you need their E-mails i will try my best to track their e-mail adresses ..  i want to try once .. soo i m always there to help ...
i think we have to make some moves in our friends and family as well  by starting forward mails about thalassemia  , it will help people to understand thalasemia and to respond in better way they can ...

take care
Umair

Narendra - if those type of emails are spams then y they are sent on the first place???wht good it does to anybody in forwarding it across to million people

Here are few things for your reference
From: http://www.hoax-slayer.com/krista-marie.html

Any email that tries to convince recipients that a donation, prize, or other benefit is somehow contingent upon how many times the message is forwarded is almost certainly a hoax.

From: http://www.breakthechain.org/exclusives/natalie.html

When you forward a chain letter, your e-mail address, and those of the people to which you send it, are attached to the message.  Spammers and scammers often collect chain letters as a means to building their mailing lists. So, this message (and others like it) do no good and could actually do harm. That's reason enough for me to break this chain!

I think technology should be used for better purposes. Please do NOT forward such emails (Company X will donate this if this email is forwarded to 10 ppl or something bad will happen if they don't forward this email in next few days!!) to anyone. Unknowingly, we are wasting time - not only our's, but of our friends and families and giving our email id to some unknown person who might sell the email id for some money.