Eugenio La Mesa's Blog on Social Business

Agenda of my third trip to India for Cure Thalassemia

In October 2010 I did my first trip to India for Cure Thalassemia; in July 2011 the second one.

In a few days I'll go to Bangalore with Pietro Sodani and Stav Melides. 
We will discuss with  Narayana Hrudayalaya hospital and the Mazumdar Shaw Cancer Center the status of the BMT project both in Hyderabad and in Bangalore, including the possibility to start doing BMT from Haplomather; a joint research project on BMT and a thalassemia excellence check-up center.

 26 November 2011 Saturday

02.00 AM    Landing at Bangalore Airport 
05.00 AM    Arriving at the Hotel
09.30 AM    Meeting with the management of the Narayana Hrudayalaya hospital and the Mazumdar Shaw Cancer Center

 2.00 PM     Meeting with patients
 8.00 PM     Pietro Sodani lecture on Bone Marrow Transpltantation in Thalassemia at the Bangalore hematologist association

 27 November 2011 Sunday

 3.30 AM     Fligth from Bangalore to Rome

75 FAQ on BMT in the Cure Thalassemia site

As I have already written, Pietro Sodani (Cure Thalassemia co-founder and scientific coordinator) gives his free advice via email to patients from all over the world. In the first months he has replied to about 100 people, and so we have decided to create a comprehensive Frequently Asked Question (FAQ) page on Bone Marrow Transplantation from identical donor and from haploidentical mother.

We have about 75 FAQs, written by Dr. Sodani and me, and we will update them regularly.

I'm confident that these FAQs will help thalassemia patients, parents and doctors to know many useful information about BMT, so they have all the facts to take a decision.

Cure Thalassemia free advice on BMT:100 emails from 16 countries from all continents

Since June 2011, Dr. Pietro Sodani (Cure Thalassemia co-founder and scientific coordinator,who has done more than 400 BMTs with Prof. Lucarelli,the inventor of BMT for thalassemia) gives his free professional advice via email to tell patients if they can have a Bone Marrow Transplantation(BMT) to become thalassemia free,and what the results might be.

Since then he has replied to 100 patients, parents and doctors from 16 countries in all continents:
Australia, Bangladesh, Bulgaria, Cyprus, Egypt, India, Iraq, Ireland, Italy, Kenya, Pakistan, Spain, Sri Lanka, UEA, UK and USA.

We are proud of what he is doing and he will keep answering questions in the next months. 

Cure Thalassemia website has 1K visitors from 67 countries

We have launched the Cure Thalassemia web site in June, and since then we have add:

• 1,050 visitors from 67 countries
• 1,630 visits 
• 4,450 page views

What is interesting is that the site has just a few pages about the BMT (from matched identical donor and also mismatch haploidentical from the mother) and our partnership with the Narayana Hrudayalaya hospital of Dr. Devi Shetty in India; so far our online marketing budget is zero, this is just online word of mouth.

These preliminary results are very encouraging, there are thousands of thalassemia patients and parents from all over the world who wants to know more about the cure of thalassemia.

I'll go to Bulgaria at the thalassaemia conference for patients and parents

I'll spend 2 days at the 4th European symposium on rare anaemias and the 3rd Bulgarian national thalassaemia conference for patients and parents, in Sofia on November 19-20 2011.

I'll go with my friend Stav Melides, a parent of a Thalassemia patient, Cure Thalassemia international liaison officer and former TIF director.

I'll meet patients, parents and doctors from Europe and the Middle-East, to further improve my knowledge of the needs of the thalassemia community.