Archive for category Thalassemia
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.
Eid & New Year celebrations at Simone Montomoli Unit, PIMS, Islamabad
Posted by Saira Faisal in Events, Pakistan, Thalassemia on January 14th, 2010
by Saira Faisal
Treating a patient for an illness is not just about giving them medicines and carrying out complicated surgeries, it’s also about giving them the love and comfort which can heal their mind and soul. Generally they say that a body can heal itself, which is true to quite an extent, but what the body can’t heal properly is the feeling of being alone and not being loved. Cure2Children is not just about saving lives, it cares enough for its patients to make their treatment period a comfortable experience.
They consider social bonding a very essential part of the treatment. Families are not created by blood relations alone, to them, the idea of caring and loving someone to the extent that you can make them happy is what creates a family. And cure2children is all about caring for its family. So, on Nov 28, everyone at C2C Pakistan decided to decorate the Simone Montomoli Unit for Eid and New Year to give a breath of fresh air to Tasbeel 9 and Zulkifal 1 year old, who were admitted there in those days.
We all decorated the unit with lights and balloons and Dr. Sadaf gave the kids another surprise by bringing gifts for them. They were really happy. Everyone was very excited in being able to bring this happiness and to see it on their faces. The doctors and other members of the unit really enjoyed being with the kids and they were truly happy to see Tasbeel playing on her chess board and Little Zulkifal looking very adorable in his new clothes; really loving their gifts!
Second visit to Jaipur-India
Posted by Eugenio La Mesa in India, Projects, Thalassemia on November 17th, 2009
By Lawrence Faulkner
We met with Rachna and Ganesh in the hotel lobby before returning to the Prem Niketan Hospital where Mrs. Parnami is waiting for us. The current situation, unfortunately, is that a major donor who had pledged 20 million rupees (about 300,000 euro) has pulled out. We are disappointed but still determined to go ahead with the project. At an enlarged meeting to discuss how to change the strategy, we agreed to start primarily with a program oriented at screening and thalassemia prevention involving the local association, represented by its chairman Naresh Bhatia.
The next morning we go to find Mr. Prithvi Raj Singh, of the Jal Bhagirathi Foundation, a friend of Ganesh and Rachna’s, he seemed pretty optimistic about the possibility of obtaining funds. We discussed various possibilities and we left this meeting heartened and reloaded. In the evening I was invited to dinner in a beautiful restaurant converted from an ancient Mahrajha residence, the Raj Palace.
Participation of Cure2Children at the 4th International Congress on Thalassemia
Posted by Lawrence Faulkner in Projects, Thalassemia on November 5th, 2009
By Lawrence Faulkner
The conference was interesting but without anything substantially new. The Congress was organized by the Thalassemia International Federation (TIF) in Delhi, 31st October - 1st November 2009. Supportive care with regular transfusions and appropriate medical follow-up have the potential to extend life expectancy in thalassemic patients to over 50 years.
However, in developing countries the main problem remains, access to adequate care and with the cost of drugs well above the average income, then in fact, the majority of patients with thalassemia still do not exceed 20 years of age.
Even with regard to gene therapy, although significant progress has been made, this will not be routinely available for at least another decade. There is a unanimous consensus on the absolute necessity of effective screening programs and prevention.
Second Visit to Bangladesh
Posted by Lawrence Faulkner in Bangladesh, Projects, Thalassemia on November 5th, 2009
By Lawrence Faulkner
Bangladesh-Dhaka-Buriganga-river- I arrived in Dhaka on Monday 2nd November in the afternoon, and was greeted by a young employee of Grameen Kalyan, very friendly, he accompanied me from a beautiful road that runs along a tributary of the Buriganga. At Grameen I was welcomed by Dr. Shamim ul Moula then joined by Imamus Sultan, the Head of Grameen Kalyan. We discussed the draft for the treatment and prevention of thalassemia in Bangladesh and the agenda of my visit.
The next morning along with Shamim I visited the Holy Family Red Crescent Medical College Hospital, where we met the Director, Professor Siddiqur Rahman. This is a local Red Cross hospital interested in participating in the project. They have a large organization spread throughout the territory.
At the United Hospital Limited, I met the Managing Director Faridur Rahman Khan. A beautiful private hospital opened three years ago that is already running heart surgery and kidney transplantation. They are very well equipped and have a qualified and motivated staff in pediatrics. In the afternoon we visited the Square Hospital Limited, Dr. Amer Wahed, Associate Medical Director and Hematopathologist who trained both in the U.K. and in the U.S., proudly shows us a diagnostic service and treatment at the highest level.
Wednesday 4th November a new visit to Dhaka Shishu (Children’s) Hospital, where we have a meeting with the Director-General Professor AR Khan, with the Head of Hematology Professor Wakari Khan, and Professor Belayet Hossain, Pediatric Hematologist, also present Dr. Shamim and Imamus Sultan. We discuss a possible collaboration.
I am convinced that we can start a project for effective prevention and treatment of thalassemia in Bangladesh. There are all the prerequisites of resource, personnel and facilities, Grameen also has a system of clinics and dispensaries in the territory that already covers over one third of the population.