Eugenio La Mesa's Blog on Social Business

BMT from haploidentical mother to child with thalassemia

2012-04-28T11:38:20+02:00

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.

Testimonials of Bone Marrow Transplant(BMT) in thalassemia

2012-04-25T09:08:40+02:00

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 MoU with Narayana Hrudayalaya/MSCC on BMT for thalassemia,research and lower the cost

2012-02-19T11:35:00+01:00

Cure Thalassemia has signed a new MoU with the Narayana Hrudayalaya(NH) and the Mazumdar Shaw Cancer Centre(MSCC) in India.

It is about

Cure Thalassemia patients can do BMT at NH/MSCC with the daily supervision of Dr. Pietro Sodani
significantly reduce the cost of the BMT
do research in the field of BMT both for matched donor and haploidentical BMT

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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2012-02-11T11:38:31+01:00

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My letter to Bill Gates for Cure Thalassemia and the research on BMT

2012-01-30T22:22:00+01:00

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.

Boehringer Ingelheim, Ashoka global partner of “Making more health”, supports Cure Thalassemia

2012-01-25T21:00:00+01:00

Boehringer Ingelheim, one of the main pharmaceutical companies in the world, which is also global partner of Ashoka in the “Making more health” project to support social entrepreneurs in the health-care sector, has decided to sustain Cure Thalassemia, with a donation.

I heartily thank Boehringer Ingelheim for their trust in the innovative model of Cure Thalassemia, and also in the people involved in the project, starting with the co-founder and scientific director Dr. Pietro Sodani.

We are studying other joint cooperations for the future.

Google gives an AdWords Grant to Cure Thalassemia

2012-01-07T11:53:00+01:00

Google has given an AdWords Grant to Cure Thalassemia, with 10,000 USD per month of free ads on Google.

We will use it raise the awareness fo the BMT-Bone Marrow Transplantation (so far the only cure available) and the free advice of Dr. Pietro Sodani (co-founder and scientific coordinator).

Thanks a lot to Google for this opportunity, and to my friend Claudio Zamboni for his invaluable and passionate help.

Agenda of my third trip to India for Cure Thalassemia

2011-11-23T23:21:00+01:00

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

2011-11-12T15:54:58+01:00

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

2011-11-12T15:23:27+01:00

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.