latest!!! - Thalforum

anubha · July 3rd, 2006, 12:17 PM

hey people!
hope this overdue message finds all of you in the best of health and spirit!
got news to share.We, at Delhi, are trying hard to disseminate awareness regarding thalassemia.We all know that the Indian Government's attitude towards this cause has been far from satisfactory....so we just thought that we would begin by targetting the huge Multi National Companies that have mushroomed in India. We began with American Express and got a tremendoousss response from the employees!I understand that educating a few hundrerds belonging to a couple of companies is NOT going to serve the purpose, but lets take this as a beginning....
I am here today for two things
First and foremost, Ii would like to request all those members in Delhi to please come forward and help us in carrying the message forward....WE WANT MORE HANDS!!!!!!!
Also,I would like to suggest those residing in places like Pune, B'Lore, etc to follow this program and try and catch hold of giants in their cities for blood donation and awareness....

Members interested in volunteering may contact me at 9818793735.
(Our next camp will be most probably in Noida - please come forward!)

Regards
Anubha Taneja

Vik · July 3rd, 2006, 10:50 PM

Great effort.
I would come if I was there.

Just wanted to know what is the most common questions people ask in such seminar/camps? Have some of them heared about thalassemia before? What is their most common reaction after knowing and understanding Thalassemia?

Do you get contacted by some the second time or a follow-up asking for more information?

Just curious and want to know for my own academic purpose.

Vik

anubha · July 4th, 2006, 05:41 AM

Interesting and valid questions!

The most common question that people ask is "How does one acquire thalassemia?".
Unfortunately,whoever knows about thalassemia knows about it ONLY because they have a thalssemic in the family or in a friend's family, etc.
Most of the people are schcked to know about thalassemia - shocked at the complicated nature of the disorder and even more shocked about the fact that they neverrr knew about such a devastating disorder....yes, SHOCK is what I generally see on their faces!
Till date, only one person got in touch with me regarding thalassemia - and that person is now the most active member of Thalassemics India,infact he is the one behind our "mission corporate". Others prefer to visit our website and go through the pamphlets that we distribute in camps.People enquire a lot about how they can help.

Hope that satisfies you.For anything that you might want to know, do feel free to drop a mail here!

anubha

rajeshpop · July 4th, 2006, 12:43 PM

Quote:

Originally Posted by anubha

hey people!
hope this overdue message finds all of you in the best of health and spirit!
got news to share.We, at Delhi, are trying hard to disseminate awareness regarding thalassemia.We all know that the Indian Government's attitude towards this cause has been far from satisfactory....so we just thought that we would begin by targetting the huge Multi National Companies that have mushroomed in India. We began with American Express and got a tremendoousss response from the employees!I understand that educating a few hundrerds belonging to a couple of companies is NOT going to serve the purpose, but lets take this as a beginning....
I am here today for two things
First and foremost, Ii would like to request all those members in Delhi to please come forward and help us in carrying the message forward....WE WANT MORE HANDS!!!!!!!
Also,I would like to suggest those residing in places like Pune, B'Lore, etc to follow this program and try and catch hold of giants in their cities for blood donation and awareness....

Members interested in volunteering may contact me at 9818793735.
(Our next camp will be most probably in Noida - please come forward!)

Regards
Anubha Taneja

Hi Anubha, Hyderabad (INDIA) has 554 affected & had been targeting MNC'S/ IT for blood donation as well awareness from last 3 years & here also a shocking expression about THALASSEMIA,carry on with the good work as we are striving hard to nail the awareness among the corporates as well those illiterate who are from remote places. All the best.
with regards
rajeshpop

anubha · July 5th, 2006, 04:08 AM

You know what, theres something thats been bothering me for quite sometime now.The very fact that I have to talk to around 150 donors at a time personally about thalassemia implies that they have not heard it /read about it elsewhere, which in turn implies complete apathy and indifference on the part of the government towards thalassemia! That is to say,we will save gallons of energy if try and approach the government instead.The only problem is HOW???? Lot of our senior members have written letters, posted requests to Ministers, etc but we all know the outcome (or lack of it!).I am really thjinking hard on how to draw the Governement's attention to this disorder. Right now MNCs spend a lot of money on other problems coz poor guyz have not heard about thalassemia.Once information seeps in, we will not need to talk to them about it,they will include thalassemia in their programs on their own accord.
So please come up with suggetions in this regard.

Prince · July 6th, 2006, 01:47 AM

MEDIA................ Media is a very potent tool for this purpose if used in the right way. See..... audio visual media is the way to reach the masses in the brodest way. I will write more about it soon......

Pranav · July 6th, 2006, 03:07 PM

Hi

We know media will be the best way but how to reach those who are linked with it. I mean to reach them in a big scale.

Pranav

gagancha · July 8th, 2006, 01:45 AM

i agree that media can and will play a vital role in spreading awarenesss i had suggested earlier i will suggest it again many video documentaries have made about thal why dont we load it on the website as well see if we can convince the media if they could air it we can try
Maybe the MNCS can help us with this

Prince · July 9th, 2006, 04:20 PM

Yes.......... thats what I really want to emphasise on. Along with boom in many other service sector businesses, Indian media is also witnessing high scale boom these years. Every news channel (Domestic & international) are airing many documentries related to new subjects & my friends Thal is a very new subject. I had made few efforts for example there is a programme that come on BBC. The mail that I sent is as below:

Hello Deepti,

I have just seen Being Indian episode & am totaly convinced that this kind of media can creat a lot of awareness. I have seen the following episode:

In this programme Isha, and her 16-year-old friend Ankita, attend a conference about the abolition of child marriage. Isha and her fellow students try to make a difference by going out into the slums to gather information for UNICEF to find out whether money being spent on development is really helping the poor.

Well I do not know whether my writing mail will mean something or not but still I feel like writing it, as I would like to suggest you a new topic which needs a lot of awareness. It is Thalassemia Care & Managment of Disorder in India .

And she replied:

Hi Puneet,
Thanks for your feedback and your suggestion. I will certainly pass this on to the producer in London and to our Viewer feedback team.

Best wishes, Deeptie

After this I have not heard back from her. I know that my this effort might not bear fruits but that does not mean that I will stop trying. Friends If we all approch the same people at one time they might think about it. Media has emence power as in a country like India where the level of awareness about this disorder is almost zero, only visual media can act as a catalyst to the awareness programme.
Another point which can really change thinking is when we change ourselves. I feel really sorry to say this but I know many thals who do not like to disclose this fact to their social circle that they are thals.
Things have changed but just for few lucky ones. A thal childs parents coming from average or low income group still are not able to accumulate enough resources for the proper upbringing of their thal kid, resulting in growth retardation of child which forces parents to come to the conclusion that getting education, doing job & getting married like a normal human is not in the luck of their kid.
If we really wnat to change things we need to get to the roots of india or any country & try to creat mass awareness so that the government can feel the heat of problem.

Prince · July 12th, 2006, 01:52 PM

I got to know through my friend here in chandigarh tht there is a confrence at Delhi in november.....................Is that True

Narendra · July 12th, 2006, 02:17 PM

Hello Guys,

Many of the members from India might remember, seeing the movie Salaam Namastea and the message of Thalassemia passed on to the general public.

Here is a link Link Mentioning Awareness of Thalassemia in Movie where we can find information on a Indian Movie - Salaam Namaste in which there is a mention of Thalassemia so that the general public is aware of it(through the movie)

http://bsnl.in/entertainment.asp?intNewsId=54801&disstyle=block&d aysbefore=1

and here is the quote's of the director
Siddharth Anand, director, Salaam Namaste, "I came across thalassemia while reading up on issues about pregnancy for my script. Further research convinced me that it would be a good idea to introduce the thalassemia motif as a social message. But even I was not aware of the impact till organisations working for the cause barraged me with calls and mails congratulating me. Some even requested that they wanted to put up stalls outside the halls screening the film and distribute pamphlets that elaborated on the issue."

-Narendra

rajeshpop · July 13th, 2006, 03:21 PM

Dear All , Hi, Hope to meet in Delhi on 11& 12 Nov 2006, but till then carry on with awareness programme in IT or local neighbourhood.The layman who is unable to pronounce THALASSEMIA that i do not know should also be targeted to make them aware in their language our country is of different languages so try in your home town or near by place to tell this that their is a disease Thalassemia & invite media persons print & electronic to be with you to cover the issue concerning the mass once the local media covers these issues it will make a lot of difference.Try & try again you will succed at last.

with regards
rajeshpop

gagancha · July 15th, 2006, 10:40 AM

I Just Wanted To Clarify That THALASSEMIA Is Not A Disease But A Blood Disorder If We Use The Term Disease It Would Cause Problems For Us

marientina · July 15th, 2006, 01:28 PM

I would have to agree that using disease to describe thalassemia is wrong even on a dictionary level since it isn't contagious and that kind of language freaks people out. I often read the word disease being used in lots of small newspapers all over the world and it makes me mad.

rajeshpop · July 15th, 2006, 10:28 PM

gagncha,hi, The layman doesnot understand until you explain it that thalassemia is a disease & slowly drive them to being blood disorder,etc. Even the govt. does not & for concession in Rail we are named disabled,& it's for sure that genetic blood disorder comes under disability,we are born with a lesser GENE. There are so many factors to be used to explain about this so do not be shy just use it your way & make people aware of this.
In this exercise EACH ONE TEACH ONE can work but need is mass awareness.
with regards
rajeshpop