Hi Everyone!!
I'm back from the 4
th National Thal. Conference held in Lahore. I was sent there on behalf of my foundation The Jamila Sultana Foundation (JSF) with Dr. Muhammad Sufyan and another Thal. patient, you can see our picture attached below with Dr. Sufyan in the center and me on the right. He is really a very nice person and I had a wonderful knowledgeable experience with him.
There were several sessions of the conference which was divided in the two days. It was nice to see representatives and patients from 33 Thal. associations from throughout Pakistan under one roof where they presented their performance, troubles being faced and their recommendations for the govt. to overcome them.
There were several specialist who presented their studies such as their experience of Thal in Pak and efficiency of Deferiprone etc. A specialist from Canada Dr. Durhane Wong-Riger, PhD presented the information regarding Improving patient self-management and state of art Iron chelation programme introducing Exjade and the so far collected data about it since the launch of Exjade in Canada.
In the open house session I recommended a solution to overcome the blood shortage issue that each time a driver goes to re-new his/her licence every year; they should first present a certificate of blood donation for it. They replied that it is a great idea but the Human Rights associations cause problems and object on compulsion donation. However they noted my suggestion and would present it to the legislation committee. Let's see what happens about it
One good thing that came forward was the introduction of Feri Nil (Deferiprone) by "Global Pharma." the mother company of my Foundation JSF; who is producing it locally. This will reduce the price of the medicine (Deferiprone) from Rs. 12 per capsule of Kelfer from India to Rs. 7 per capsule of Feri Nil. You can get it from them via your local Thal. association throughout Pakistan.
JSF also announced that it is providing Blood, Desferal, Feri Nil and everything else (from distill water to electrophoresis) free to it's registered patients and I can assure everyone that they are telling the truth as I am there as well. They are doing a great job and I am really impressed by their dedication to serve the Thal. patients.
Guess what Andy! I met Waleed there!! I was so thrilled to meet him in person as we have not seen each other in ages! He was the one who recognised me from the picture that is on my homepage and also he had read the ID card that I was wearing. Along him were the patients from his Thal. association "Fatmid Foundation, Lahore" who were also thrilled to see me as Waleed had told them about me. They are such a nice bunch of kids full of enthusiasm and great will to do anything and overcome all challenges that Thal. throws at them.
I met great specialists and came to know about their success stories. One of them from whom I was impressed was Dr. Shamsi who claimed that he had done several successful Bone Marrow Transplants in Pak. and four of his patient have now become parents thus eliminating the doubt of sterilization after BMT.
In the end of the first day there was an entertainment session where children representing all the Thal. associations came on stage and danced on a Bhangra Beat which was sung by a performer invited to the event. Then the children from the Lahore Thal. associations presented a musical tableau on the famous Anar Kali story. The video clips of these two are attached with the proper player.
On the second day there were several workshops on different techniques to aid Thal. treatment while the children were sent on a trip to the Lahore Zoo.
In the end of the second day on the closing ceremony; the acting President of Pakistan Mian Muhammad Soomro presented gold medals to different Thal. patients
Excluding me!!! 
I was not considered because my Foundation didn't know about sending the proof of my achievements with my nomination. Well, maybe next time I will get an award. Anyway, there were several great Thal. kids who have done great feats such as piloting a plane and going to the K2 (second highest peak) base camp couple of times etc.
Then he presented shields to the organisers who in return presented one to him.
Well it were nice two days full of information and excitement. Plus I met Waleed which was really exciting for me.
Take care, Peace!