I've been invited to the European Social Business Forum in Germany, to discuss about the situation and future directions of Social Business in Europe, and of the new idea of Social Business Cities.
Thanks to Prof. Yunus and Hans Reitz of Grameen Creative Lab for the opportunity.
You can read the program here.
In October 2010 I did my first trip to India for Cure Thalassemia; in July 2011 the second, in November 2011 the third and in July 2012 the fourth. In the last 4 years, this is my ninth trip to South Asia (including Pakistan and Bangladesh) for the thalassemia project.
In a few days I'll go to Bangalore with Pietro Sodani.
We will discuss with Dr. Devi Shetty and the management of the Narayana Hrudayalaya/Mazumdar Shaw Cancer Center:
Dr. Sodani will also do a free visit with 20 children from India and abroad who plan to do a Bone Marrow Transplant(BMT) to become thalassemia free.
14 December 2012 Friday
1.00 PM Meeting with the management of the Narayana Hrudayalaya hospital and the Mazumdar Shaw Cancer Center to discuss the different topics
2.30 PM Meeting with patients who want to do a BMT
15 December 2012 Saturday
We have reached the very important milestone of 1,000 free advice via email of Dr. Sodani to become thalassemia free with no more transfusions.
In the Cure Thalassemia blog you can read all the details.
On October 13th 2012 I'll talk at TEDx Bologna: passion and creativity, about the social business Cure Thalassemia.
For me it is big honour to be a TED speaker, and when I co-founded Cure Thalassemia I had been greatly inspired by the TEDTalk of Aravind Eye Care.
Thanks to Andrea Pauri for this opportunity.
In October 2010 I did my first trip to India for Cure Thalassemia; in July 2011 the second one and in November 2011 the third.
In a few days I'll go to Bangalore with Pietro Sodani and Chandrakant Agrawal.
We will discuss with the management of the Narayana Hrudayalaya hospital and the Mazumdar Shaw Cancer Center
Dr. Sodani will also do a free visit to 15 patients who plan to do a Bone Marrow Transplant(BMT) to become thalassemia free (no more tranfusions), and he will spend time in the BMT unit to supervise protocols and procedures with indian doctors and nurses
27 July 2012 Friday
9.30 AM Meeting with the management of the Narayana Hrudayalaya hospital and the Mazumdar Shaw Cancer Center to discuss the different topics
2.30 PM Meeting with patients who want to do a BMT
28 July 2012 Saturday
Bone Marrow Transplant(BMT) from matched donor is available since more than 30 years, and it is the main cure available for thalassemia major patients to become thalassemia free with no more transfusions. But only 25% of patients have a matched donor.
The good news is that it is possible to do the BMT even if there is no matched donor, using the mother as the donor. This BMT, called "from haploidentical mother to child with thalassemia" has been invented in 2002 by Dr. Pietro Sodani (Cure Thalassemia co-founder and scentific coordinator).
In the Cure Thalassemia site we have added a page dedicated to this topic, with all the main information, and links to the scientific papers.
I strongly believe that this is the future of BMT, because the vast majority of thalassemia patients has a mother in good shape, which is what is necessary to do this BMT.
In the Cure Thalassemia site, we have added a new BMT testimonials page, to allow parents and patients who are planning to do a BMT for thalassemia to be able to talk to patients and their parents who have already done a BMT.
We think that this is something very important, because just talking to the doctors might not be enough. Read all the details here.
Cure Thalassemia has signed a new MoU with the Narayana Hrudayalaya(NH) and the Mazumdar Shaw Cancer Centre(MSCC) in India.
It is about
More deatiled info in the Cure Thalassemia blog.
Thanks to all the people who made this agreement possibile, I'm firmly convinced that the joint staff of Cure Thalassemia, Narayana Hrudayalaya and the Mazumdar Shaw Cancer Centre can do great things for the thalassemia patients.
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Dear Bill,
I respond to your post about a world-changing idea. I'm no longer a student, but I have a strong passion and I'm deeply studying Thalassemia, the most spread mortal genetic disease in the world.
1.5% of the population – 100 million people – is carrier of thalassemia minor, mainly in Southeast Asia, southern China and Arabian Peninsula. In western countries it has almost disappeared, mainly for prenatal screening and therapeutic abortion.
Thalassemia carriers are resistant to malaria, and they are concentrated where malaria is endemic.
To survive, a thalassemia major patient must receive blood transfusions every 3 weeks during his life, and he also needs daily drugs and regular iron chelation therapy, to remove the excess of iron caused by the transfusions. At least 15 million blood units are required per year, and it is a relevant cost for the health-care system, and an issue for the children and their families.
In low-income countries, the great majority of children dies within the first year of age, because they can't afford the transfusions, and the ones who survive, they barely reach 15 years of age.
In Italy in the 1980's, Prof. Guido Lucarelli invented the only cure available: Bone Marrow Transplantation (BMT) from compatible donor; he has done more than 50% of all the BMTs in the world. In low risk young patients, the thalassemia free survival rate is 89%, with no more need of blood transfusions, drugs and iron chelation. In Asia the cost of a BMT is about $25,000.
But only 25% of patients have a matching donor, and Dr. Pietro Sodani, who works with Prof. Lucarelli since 10 years, has invented the BMT from mismatched donor (published in 2010 on Blood Journal), using the mother as donor, and giving new hope to the 75% of patients without a matching donor.
Since thalassemia is mainly spread in developing countries and it almost affects poor people, the cost of the cure is too high for most of them.
The changing idea that I propose is to keep the research going, with your creativity and vision, to significantly lower the cost of BMT, doing it at home rather than in an hospital (something similar has been done in Mexico with encouraging results).
Thalassemia is a time bomb, WHO forecasts that it will double within 20 years, and it is also a huge financial burden for developing countries for the cost of blood transfusions and drugs. There is little research going on, because in western countries there is a small number of patients (about 1,000 in the USA).
We need to have BMT accessible to everybody, at a low price, with and without a matching donor.
To know more, you can read the Cure Thalassemia site (Prof. Lucarelli and Dr. Sodani are both involved) and the FAQ on BMT.
Thanks for your valuable time.
With Regards and congrats for your philanthropic work,
Eugenio La Mesa
Co-founder and Chairman
Cure Thalassemia
"Live without Thalassemia major"
P.S.
I work in the software field, as a Microsoft partner, with Francesco Balena and Giuseppe Dimauro, the 2 only Italian Microsoft MSDN Regional Director (both .NET worldwide experts and Microsoft press authors). I won the Microsoft Italy award for the most innovative Internet application. More than 130 Microsoft employees in many countries know me personally, you can check on my LinkedIn profile.
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