TEDx Bologna talk:Cure Thalassemia,a Social Business –Eugenio La Mesa

Eugenio La Mesa’s talk at TEDXBologna 2012 on the social business Cure Thalassemia.

Bone Marrow Transplant(BMT) from haploidentical mother to child with thalassemia:the future

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 using protocol 30”has been invented in 2002 by Dr. Pietro Sodani (Cure Thalassemia co-founder and scentific coordinator).

In our site we have added a page dedicated to this topic,with all the main information,and links to the scientific papers.

We believe 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

Listening to the feedback of the worlwide thalassemia community,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.

Thanks to Andy Battaglia for his help and advice on this topic.

Partnership with Thalassemia Patients and Friends forum to moderate an area on BMT

We are glad and honored to announce a great partnership with the Thalassemia Patients and Friends forum,the most important online forum for the thalassemia community worldwide,with more than 3,000 active members and 41,000 posts.

Dr. Pietro Sodani (scientific coordinator) and Eugenio La Mesa (chairman),the 2 Cure Thalassemia co-founders,will answer questions and moderate the new area of the forum entirely dedicated to Bone Marrow Transplant(BMT) and Cord Blood Transplant(CBT) both from matched and mismatched donor.

We thank Andy Battaglia, the admin of the forum,for this exciting opportunity to let us give our help and support to families and patients all over the world;we will give as many reliable information as possible on how to be cured from thalassemia,with no more transfusions.

“I find this to be an exciting cooperative effort and am greatly pleased to have an ally in Cure Thalassemia”,says Andy Battaglia.

This is the welcome message of Andy to introduce us to the members of the forum.

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

Narayana Hrudayalaya (NH) is a 6,000 bedded prominent Indian Hospital chain,the world’s largest heart hospital for children.  The Mazumdar Shaw Cancer Centre (MSCC),inside the Narayana Hrudayalaya Multispeciality Hospital in Bangalore,with 1,400 beds is one of biggest cancer center in the world,and has a 14 bed BMT unit.

Cure Thalassemia-Narayana Hrudayalaya/Mazumdar Shaw Cancer Centre

An agreement between NH and Cure Thalassemia(CT) has been signed;CT can use the BMT units of NH and MSCC for its patients who want to do a Bone Marrow Trasplantation(BMT),under the daily supervision of Dr. Pietro Sodani (CT co-founder and scientific coordinator),and with the scientific advice of Prof. Lucarelli, the worldwide authority in the field of BMT for thalassemia.

NH can also use the scientific advice of Dr. Sodani and Prof. Lucarelli for its thalassemia patients,but without a daily supervision.

Furthemore CT,NH and MSCC will work together to

  • significantly reduce the cost of the BMT
  • do research in the field of BMT both for matched donor and haploidentical BMT

A joint co-ordination committee,whose chairman is Dr. Devi Shetty (NH and MSCC Founder and Chairman),consisting of executive of both the institutions has been formed which will oversee the overall functioning of the BMT Unit.

You can read more on our site.

Thanks to all the people who made this agreement possibile,we are 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 worldwide.

We are on Google+,add us to your circles

We now have a Google+ page,you can add us to your circles of friends, through the badge on the right side of our site.

Our letter to Bill Gates for the research on BMT

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) fromcompatible 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 highfor 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

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.

We 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

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 Claudio Zamboni for his invaluable and passionate help.

Follow us on Twitter

Follow us on our Twitter account.

Social media is very important for us to be in touch with thalassemia patients and parents all over the world.