Archive for category Thalassemia
First visit to Morocco
Posted by Lawrence Faulkner in Morocco, Thalassemia on June 2nd, 2010
by Lawrence Faulkner
Paolo Gardino and other Rotarians from Genova (Italy) and Rabat have been working now for 5 years on an admirable project to support screening and treatment of thalassemia in Morocco. We met up with Paolo in Casablanca on the morning of May 27 and went to Hôpital 20 Août, a major hospital in Casablanca, where we met Professor Said Benchekroun, Head of Hematology, and Professor Asma Quessar, Haematologist and Vice Dean of the Medical School. I know Asma as she is very active in international seminars on the web organized by St. Jude ‘s Hospital in Memphis (Cure4Kids). The department is modern and clean, it treats many patients, including young children with leukemia, thalassemia and sickle cell disease. They began with autologous transplantation in 2004 and three months ago the first allogeneic bone marrow transplantation in a child with severe congenital immune deficiency took place. We also go to the transfusion service, which is very well equipped. The initial impression is that Morocco is not only a beautiful country, but that there is an advanced healthcare system capable of providing complex services such as bone marrow transplantation. In the afternoon we travel to Rabat where dinner is organized by the local Rotary Club. The next morning we join the delegation of the Thalassemia International Federation (TIF) Panos Englezos (President and father of a boy who died of thalassemia, Cyprus), Andreulla Eleftheriou (Executive Director, Cyprus), D. Loukopoulos (Greece), M. Angastiniotis (Cyprus), M. El Hazmi (Saudi Arabia), Abdul Basit Mohd. Merdas and Jaafar Al Saeed Awadh (President and Treasurer Association of Thalassemia in the UAE) and Loris Brunetta (President of the Association of Thalassemia, Liguria, Italy). We visited the children’s hospital in Rabat where we met Dr. Linda Alami, Medical Director, and Professor Mohammad Khatab, Head of Hematology-Oncology. In the afternoon a visit to the Moroccan Ministry of Health and a meeting with Secretary General Rahhal El Makkaoui , the Head of the World Health Organization for Morocco is also present. We address the challenge of screening and prevention of thalassemia as well as access to care for affected children. TIF and the Ministry of Health undertake to define a strategic plan.
The Moroccan Thalassemia Association together with Rotary have organized a Symposium on Thalassemia on May 29 with presentations from the different representative from TIF, I present our results in Pakistan. There is a large group of Moroccan professionals taking part as well as a strong representation of parents many of whom participate with questions and interventions. I get the feeling of participating in an historic event that will impact on the suffering of hundreds of children and Moroccan families. In the evening we are invited for a social dinner in a beautiful restaurant in the historic city center. Rabat is a beautiful city full of life and young people. In these days, there is an international music festival being held with the participation of artists such as Sting, Carlos Santana and Elton John. I hope to return soon.
Visit to Pakistan to arrange a Social Business
Posted by Eugenio La Mesa in Bangladesh, Pakistan, Photos, Projects, Social Business, Thalassemia on May 17th, 2010
By Lawrence Faulkner
I should have left for Islamabad via London on Sunday the 9th May, but the Icelandic volcano had other ideas! I had almost given up but by the afternoon the level of ash seemed to reduce so I booked a new flight the next day via Rome Fiumicino. Excellent decision, I arrived in Karachi via Dubai on Tuesday the 11th at 4.30 in the morning, a car from the hotel was waiting for me. I slept for a couple of hours, then I met Sadaf at the hotel to go to meet Tahir Shamsi and his colleagues at the National Institute for Blood Diseases. We spoke of the various patients and future prospects, very interesting, we are all thrilled with the results. All of the children who have received transplants are doing very well. I met with a family of a child with low risk thalassemia and a matched donor, they are rich and want to go to Italy, I try to convince them that there is no reason for them to do this, I don’t know if I have succeeded.
In the early afternoon a meeting with Ali J Siddiqui, a brilliant young Pakistani and a Director of a large company, the JS Group, and member of the Board of Directors of the Acumen Fund. He seems very interested in our activities and is sensitive to this issue. I will present a brief proposal, which he has pledged to consider carefully. Acumen Fund is a large non-profit organization geared to support projects that have a high probability of financial autonomy in the long term, their tools are loans and partnerships in projects geared towards social enterprise. The meeting was very interesting, so much so that I missed the plane to Islamabad.
The next morning I awoke at 5am and again to the airport, off to Islamabad for a same day to meeting, firstly to meet with the Directors of the Pakistan Institute of Medical Sciences (PIMS) and then in the afternoon, with the Italian Ambassador Vincenzo Prati, who is always very helpful and hospitable. The doctors and nurses of the bone marrow transplant unit “Simone Montomoli” appear to be very happy and very motivated. They have good reason to be, I am very proud of what we are doing together and especially how we have used the donations and the trust of our many supporters.
Together with the administration of PIMS we discuss a plan to gradually make them independent, financially and professionally, the bone marrow transplant service that is now running with 12 transplants already performed. On Saturday morning a small symposium on thalassemia and transplants involving many people including coordinators from thalassemia centers such as doctors Atifa Shuaib and Tahira Zafar, the latter had worked earlier in PIMS and has seen the birth of our project.
In the evening we are invited to dinner by Sara Rezoagli, head the Italian delegation in Pakistan (Deputy Ambassador), where we spend a pleasant evening getting to know other Italians who were in Islamabad for different reasons.
During this visit I am even more motivated, I go back with new ideas and plans for the next step. Whilst travelling I read the new book by Nobel laureate Muhammad Yunus, “Building Social Business”, in which which he has devoted an entire chapter to Cure2Children, I still can not believe it!
Yunus’ new book “Building Social Business”, a Chapter on Cure2Children
Posted by Eugenio La Mesa in Bangladesh, Projects, Social Business, Thalassemia on May 5th, 2010
by Eugenio La Mesa
In his new book, just released, “Building Social Business: The New Kind of Capitalism That Serves Humanity’s Most Pressing Needs“, the Nobel laureate Yunus has dedicated a whole chapter of 15 pages to Cure2Chlidren on the social business we’re doing together with Grameen in Bangladesh and the treatment of thalassemia by Bone Marrow Transplantation.
They cited several times Lawrence Faulkner, Peter Sodani, Eugenio La Mesa, Sadaf Khalid and Prof. Guido Lucarelli.
A huge thanks to Professor Yunus and Karl Weber.
Cure2Children at the Annual Congress of the European Bone Marrow Transplantation Society
Posted by Lawrence Faulkner in Bone Marrow Transplantation, Pakistan, Press, Projects, Thalassemia on March 25th, 2010
by Lawrence Faulkner
It was a great pleasure to present what we are doing at one of the most important international scientific conferences.
In December 2009, a summary of the results from the network supported by Cure2Children for the treatment of thalassemia in Pakistan, was subject to evaluation by a commission from the European group for Bone Marrow Transplantation (EBMT), which considers the relevance to the professional community and the acceptance for presentation at the 2010 Annual Meeting of the European Society of Bone Marrow Transplantation in Vienna, held March 21 to 24. This success is very important not only for the official recognition of our activity, but also to strengthen the network of professional collaborations. This congress is a reference point for scientific associations and professionals from around the world including the Middle East and Asia.
Amongst the relevant advances that emerged from the conference, is the increasing use of therapies derived from bone marrow transplantation (cell therapy) that can contribute to more effective treatment of leukemia while reducing toxicity, and the ability to perform transplant procedures more tolerably. Progress in the area for the use of alternative family donors (e.g. the mother) gives hope that this opportunity can be extended to contexts with more limited resources and technologies. Currently, in fact, in most low income realities, a transplant is only performed from a compatible brother or sister, which excludes a large proportion of children who could benefit and who do not have a compatible donor in the family.
Another important piece of data emerged from a report by the Middle Eastern bone marrow transplant group (EMBMT), is the severe shortage of facilities able to provide care for many serious illnesses of children in the region that stretches from North Africa to Pakistan. In fact, in relation to population size, the number of centers for bone marrow transplantation are less than one fortieth of those existing in western Europe or North America.
In conclusion, I’m very happy with the direction in which we are investing the efforts of Cure2Children and those of our donors, and also that an increasing number of professionals are collaborating with us.
First anniversary of the “Simone Montomoli” Bone Marrow Transplant Unit @PIMS in Islamabad
Posted by Saira Faisal in Bone Marrow Transplantation, Pakistan, Thalassemia on March 15th, 2010
by Saira Faisal
The organization that saved the lives of many people in Pakistan celebrated its success and first anniversary at the Islamabad Club on 22nd January, 2010. The anniversary frequented by high society of Pakistan and broadcasted live by the top media channels proved to be a well organized and delightful gathering.
For celebrating the first anniversary and the success of Cure2Chidren foundation in its true essence, there could be no better guests than the families and children who have been cured by Cure2Chidren . In addition to them, his Excellency, Vincenzo Prati, the Ambassador from Italy; Mr. Qamar Zaman Kaira, Minister of Information; The managing director of Bait-ul-maI, Mr. Zamurd Khan, other well known doctors and many high society people were also present.
Dr. Sadaf & Dr. Naila enlightened the guests on the role Cure2Chidren has played in the lives of its patients and in making thalessemia a curable disease for the poor people in Pakistan. Various pictures were shown on the multimedia and the guests were told about the care Cure2Chidren has given to its patients. Cure2Chidren has performed total 22 transplants in which 16 were fully sponsored and 6 were partially sponsored. On this great achievement, the chief guests; Ambassador Italy, Mr. Zamurd Khan & Mr. Qaira Praised the whole team of Cure2Chidren and appreciated the efforts and life changing concept. The Ambassador expressed his views on the success of achieving these extraordinary goals. He promised his full support and committed to help in obtaining all kind of possible help. The head of Bait-ul-Mal, Mr. Zamurd Khan committed to donate 5 lac Rs (5882 USD ) to every C2C patient in Pakistan and gave away cheques of 30 thousand Rs (353 USD) to each family of the cured children. Mr. Qaira while appreciating the enormous efforts behind this noble cause promised his full support and committed to raising Cure2Chidren to higher levels in Pakistan, with the support from President and Prime Minister.
Few other doctors, Including Dr. Tahir Shamsi from Karachi expressed their heartfelt appreciation for Cure2Chidren Italy and Dr. Faulkner for taking the initiative for such a remarkable cause. They expressed keen interest in the growth of Cure2Chidren in Pakistan and future collaboration with Cure2Chidren .
In the end Dr. Faulkner praised the whole team of Cure2Chidren Pakistan and the efforts they have made to complete all the major goals in about a year’s time. He expressed his deep satisfaction and joy attained because of the excellent results shown by Cure2Chidren Pakistan. Towards the end of the event were given different gifts to the C2C cured children. These gifts were sponsored by Cure2Chidren while presented to the families by the chief guests. With the end of the gathering began the great beginning of achieving miracles.
First anniversary of the “Simone Montomoli” Bone Marrow Transplant Unit @PIMS in Islamabad
Posted by Lawrence Faulkner in Bone Marrow Transplantation, Pakistan, Thalassemia on January 28th, 2010
By Lawrence Faulkner
(photo) As always, Sadaf and Khalid and the whole team did a wonderful job in Islamabad. The ceremony for the commemoration of the first anniversary of the ”Simone Montonoli” Unit for “bone marrow transplantation” took place at the Islamabad Club on 22 January 2010, a beautiful complex frequented by the high society of Pakistan.
In addition to most of the children cured that have come from all over Pakistan with their families, doctors and nurses of the bone marrow transplant unit, there were also about 200 guests including the Minister for Information and Telecommunications Qamar Zaman Kaira, the member of the Standing Committee Rubina Qamikani, the Managing Director of Pakistan Bait-ul-Mal, Zamurrud Khan and the Executive Director of the Pakistan Institute of Medical Sciences Dr. Ghazala Mahmood. Also present were the Italian Ambassador Vincenzo Prati, the Romanian Ambassador Emilian Ion and representatives of the Swiss and Czech Republic Embassies. Sara Rezoagli, the Italian Deputy Head of Mission who arrived form Kabul a few days ago also particpated. The Bangladesh Ambassador, unfortunately couldn’t make it.
The various authorities and the doctors took it in turns on stage, then it was the turn of the children, who delivered a composition to Cure2Children, and in turn they received gifts from the authorities. Zamurrud Khan gave EACH INDIVIDUAL family a check for 30,000 rupees. Many representative from the media were present and the event was broadcast live on major networks. I am very satisfied, the results were excellent and we are very proud to have been able to announce that after just one year, we have been able to achieve important goals, that is to say that the local teams have performed a large number of transplants (23) with results comparable to those obtained Italy but with a tenth of the cost, this gives us real hope that the system can become self sufficient in a short time.
Ambassador Prati has been very supportive and is committed to help in obtaining government funding in the context of a debt conversion agreement between the Pakistani and Italian governments. The Head of Bait-ul-Mal, is committed to sustain a good portion of the expenditure for the next 50 transplants (500,000 rupees per child) and to support us in our future initiatives in Pakistan.
It’s an enormous satisfaction both personal and professional, and it has been an honor to work with all these people eager to demonstrate that in their beautiful country a lot can be abtaind with little. Thanks to all those who have believed in Cure2Children and who have supported us, this is’ just the beginning!
FAQ: how to cure Thalassemia with Bone Marrow Transplantation
Posted by Eugenio La Mesa in Bone Marrow Transplantation, Thalassemia on January 25th, 2010
by Eugenio La Mesa
Thalassemia has been curable through Bone Marrow Transplantation (BMT) for the last 30 years. Cure2Children has been performing BMT in Pakistan since January 2009, and are planning to begin in India and also in Bangladesh together with Noble Prize Prof. Yunus and his Grameen Health Care.
We are constantly asked by people for information about BMT, so we have prepared these FAQ’s compiled by
- Lawrence Faulkner, Cure2Children Scientific Coordinator
- Dr.Pietro Sodani, Consultant Hematologist and BMT expert, member of the Cure2Children Advisory Board
Grameen-Cure2Children a Partnership to win Thalassemia in Bangladesh: A defined action plan and the institutions involved
Posted by Lawrence Faulkner in Bangladesh, Social Business, Thalassemia on January 22nd, 2010
By: Lawrence Faulkner
At the Airport in Dhaka, there is a long queue at the visa checkpoint. The intense early morning fog has delayed many flights that all arrive together mid morning. I’m very tired, even the flight from Mumbai to Calcutta was late and I spent the night in Calcutta airport, an experience that I hope not to repeat.
Grameen has arranged my transport to a hotel near their building. I meet with Sultan and Shamim to take stock of the situation and discuss the agenda.
The next morning a visit to the Shishu Hospital, the Paediatric Government Hospital in Dhaka, where the Director General, Professor Kahn, appears to be very optimistic and committed to supporting the formalization of the agreement with the board of directors of the hospital.
Later in the morning a meeting with the General Manager, Managing Director and Head of Paediatrics, United Hospital to discuss in detail the action plan, we should start with the first bone marrow transplant in July 2010. This seems a realistic goal.
I must return in April along with other colleagues for a transplant seminar that will be attended by potentially interested physicians and nurses. In the preparation of the transplant unit and in the training, doctors and nurses from Islamabad will also be involved as they have acquired a significant experience in a similar context. This is the real goal, to create the conditions and tools such that the transfer of knowledge spreads, a great satisfaction for Cure2Children.
In the afternoon a meeting with the young General Secretary of the Bangladesh Thalassemia Foundation, Dr. Robin Rahim, with whom we discuss the selection process for screening candidates for transplantation and their families. I demonstrate to him the Cure2Children database and he becomes familiar very quickly.
At the end of the day Sultan takes me to Professor Yunus, who asks us a lot of questions about the progress of the project and in particular about how personnel issues will be faced, training and above all clear definition of roles. He seems very interested and determined, I feel that I’m one of his, with such a leadership we cannot fail. An intense day but very productive.
The program for screening and prevention will begin within a few weeks and the transplants within a few months.
The morning after, a tour of Old Dhaka, I’ve never seen traffic so chaotic. Everyone against everyone, crumbling but functional rickshaw’s, carts and Piaggio Api challenge cars and smashed up buses to go through streets only a few meters wide. There are also casual passers-by with incredible loads on their heads that defy the laws of physics. Every so often you manage to see a traffic light whose role doesn’t seem very clear.
You can understand how Bangladesh is the most densely populated country on the earth, 150 million people in an area half the size of Italy. It takes us 4 hours to cross the centre, including a break of 15 minutes at Lalbagh Fort. Some children really enjoyed that I took photos and they gave me flowers, a wonderful gesture equally appreciated.
In the afternoon I leave for Islamabad, incredibly, there is no direct flight between the two capitals, I have to stop over in Abu Dhabi.
First visit to Madurai, India
Posted by Lawrence Faulkner in India, Prevention, Screening, Thalassemia on January 19th, 2010
By Lawrence Faulkner
Naren found us on the internet, he is the project manager of Nivethan Trust, an organization based in Madurai, which deals with child care in several areas, one of which being thalassemia. Madurai is a city of Tamil Nadu, in southern India, in which about 4 million people live in the urban area, where although there are many children with thalassemia, there is no true centre that follows them in an organized way. They are assisted by several doctors none of which have specific interest or expertise.
I arrive at 1pm on the 15th January, we are on the ninth parallel above the Equator, a tropical area with a temperature of 25-30 degrees in January. Naren easily recognizes me at the airport (we have already been introduced on Skype), and takes me to a hotel in the centre where I meet with Mr. Ramalingam and other members of Nivethan. We discuss the 2 day program.
The next day a visit to the government hospital in Madurai and a meeting with some parents, who I am presented to by Professor Murugalatha and Professor Shanmugasundaram of the Pediatric Department. The parents have many questions about the therapy and in particular on the possibility of a cure for thalassemia with bone marrow transplantation.
I visit the blood centre headed by Dr. Velusamy, the pediatric oncology department headed by Dr. Rajaramesharawn, where they treat mainly leukemias (solid tumours are managed by surgeons). At 12pm a meeting with a group of young doctors and later we go to visit another private hospital founded by a Catholic mission. In the afternoon we are expected at Keelamathur village, 8 km from Madurai, where I have the honour to inaugurate a small computer centre with computers donated to the Thiyagam Women’s Trust association, which deals with the training of women with disabilities. The Coordinator, Mrs. Amutha Shanty, herself disabled, is a very communicative, sweet and energetic lady.
At the nearby village of Kodimangalam Pudur another ceremony was prepared for the occasion of Pongal, the festival of abundance and harvest. Here too the Thiyagam Women’s Trust has organized a small after-school class attended by about twenty of the village children, some with disability problems.
Dr. Shanmugasundaram and I planted two symbolic trees, following a small ceremony in the village temple, a wonderful experience, emotional and not easily forgettable.
The next day a visit to the Meenakshi temple, we are accompanied by Mrs Rajalakshmi and Mrs Bose of the local Rotary club. This imposing temple has a very important role in Hindu religion, there are many couples who come here to celebrate their wedding as well as pilgrims from all over India. A really interesting morning and passed in pleasant company.
My visit comes to an end by making a plan on how to proceed with the screening and prevention program and the next steps. They all seem very efficient and motivated, I believe that also here in this reality we will begin something concrete very soon. Madurai has given me some fabulous emotions that I haven’t felt for sometime, I am very fortunate to have the privilege of being able to do this work and meet exceptional people. 3 stops await me (Chennai, Mumbai and Calcutta) before arriving in Dhaka in the morning.
The Screening for Thalassemia in Jaipur, India has Begun!
Posted by Lawrence Faulkner in India, Screening, Thalassemia on January 18th, 2010
by: Lawrence Faulkner
I arrived in New Delhi at 5 am after leaving Florence at 7:30am the morning before, to Rome and Fiumicino airport with a stop-over in Amman. At Deli airport a driver was waiting for me and he took me to Jaipur. It’s about 300 km that we cover in 4 hours.
I slept the most part of the journey, at 9.30 am we cross the Pink City, the historic city centre of Jaipur painted of pink, the colour of welcome, done for the visit of King Edward of England in 1886. At 1pm Rachna picks me up and takes me at the home of Mrs. Parnami where a sumptuous lunch has been prepared for a group of guests. We spent the afternoon working on the database with Dr Priya, Ashok Chanclani (has a child of 4 years with thalassemia) and Himendra Mittal, 31 years old and ‘oldest’ thalassemic of Jaipur.
The afternoon ends with a visit to the laboratory were blood samples are sent for screening. The day has been intense and fruitful, I have no doubt that the program for screening and prevention of thalassemia in Jaipur has begun.
The next day, is a major holiday, the Kyte Jaipur Festival. The sky of the city is filled with kites of all colours, the centre of the event is at the Chaugan Stadium. Ashok is involved in the organizing committee and introduces me to everyone. I even got to ride in a cart pulled by camels. Fantastic! On Ashok’s scooter we go back to Prem Niketam, leaving the stadium I even got an official salute from an elephant. After having discussed with Ganesh, Rachna and Mrs Parnami future programs, they take me to the airport where I’ll get a flight to Mumbai and then the next morning to Madurai.