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Dr. Nezih Cereb,Co-Founder & Chairperson

“In 2019, DATRI is aiming to add 1 lakh donors to the Registry with a specific focus on recruiting 50,000 donors from the Northern part of the country.”

of Lifesaving

Celebrating

YEARS

From DATRI’s Desk

‘Time is money’ says the proverb. However, for DATRI ‘Time is Life’. Every patient who is waiting for a match with a hope to receive a second chance at life is racing against time. Every day they wake up with the hope that somewhere, someone would have signed up as a potential Blood Stem Cell Donor, who would become their Superhero! This hope, keeps DATRI motivated and moving. It’s high time for the Indians to wake up to the statistics of recent GLOBOCAN report that is prepared by WHO’s international agency for cancer research. The report gives alarming figures on the prevalence of Blood Cancer in India. In 2018 the number of new cases diagnosed with Blood Cancer is 42,055 and the occurrence of death was 32,471. Shockingly, among the top 20 cancers affecting the Indian population, Blood Cancer was ranked 9th in 2017 and ranked 7th in 2018. The awareness on Blood Stem Cell Transplant as the last option to cure Blood Cancer has to grow and the need and significance of Blood Stem Cell donation needs to be widespread.

There is a thin probability of 1 in a 10,000 to 1 in a million chances of finding an HLA matched donor to a patient. Therefore, it is essential to expand the donor base to ensure every patient in need of lifesaving ‘Blood Stem Cells’ is provided with a donor, so that the family continues to be whole. Adding every donor to the registry requires HLA typing of the donor, which costs DATRI Rs. 1800 and as a Non-Profit organization, it is a major challenge for DATRI.

In 2019, DATRI is aiming to add 1 lakh donors to the Registry with a specific focus on recruiting 50,000 donors from the Northern part of the country. Unfortunately, North India is scarcely represented in the donors’ pool despite having a higher disease burden especially of Thalassemia. At the same time, DATRI continues to recruit donors from the southern part as well to expand the Registry. Despite having a population of more than 130 crores, hardly 0.33% have registered as potential Blood Stem Cell Donors, which is distressing. Therefore, DATRI appeals to each healthy individual to come forward to register as a Blood Stem Cell Donor and all the generous citizenry and companies to extend their monetary support so that we can continue this lifesaving mission unabated.

At this point, it is also essential to communicate a major change with the leadership of DATRI. Raghu Rajagopal, the CEO and Co-Founder of DATRI, who has put exceptional efforts in laying a strong foundation to build an efficient national registry in India with the support of dedicated staff, doctors, medical fraternity, volunteers, patients and their family and of course generous donors, has stepped down from the position of CEO. Although, he will continue to be part of DATRI Board of Directors, because of which the organization has the privilege to receive his imperative inputs to effectively embark on this lifesaving journey. Team DATRI wishes him the best for his future endeavours.

Stepping into 10th year of our Lifesaving journey, let’s look ahead for a brighter and healthier tomorrow and take up a promise to create a healthier world.

Marching ahead withthe Mission to Save Lives

DATRI’s Corner

2

The Celebration of Lives GiftedThe joy of gifting lives has doubled in this quarter. DATRI witnessed two recipients meet their respective donors at the Donor-Recipient Meets held in Surat and Vijayawada.

Akshya from Coimbatore found her Superhero Kaushikbhai Patel from Surat!

Kaushikbhai Mehedrabhai Patel, a 33 year old professional working at Shree Ramkrisha Exports Pvt. Ltd, Surat, met 12 year old Akshaya Dhanasekaran from Tamil Nadu, whose life he saved by donating his blood stem cells.

Akshaya was suffering from Thalassemia Major and she needed regular blood transfusions till she could find a life-saving blood stem cell donor. Kaushikbhai was registered during a drive conducted for a patient last year. He was found to be a match in

March 2017. He cancelled a family vacation planned during a festival to donate, and told his wife, “Saving a life is more important than celebrating a festival. By donating my Blood Stem Cells I will help someone celebrate their festival forever with the family. Donation will come first and then we will go for the vacation."

During the health tests before the donation, he was diagnosed with acute appendicitis. His treatment started immediately. Even at this time his only concern was that his donation should not get cancelled. So as soon as he recovered from his surgery he went ahead with Blood Stem Cell donation. With intense emotions, Kalaivani, Akshaya’s mother said, “Kaushikbhai, is now a part of our lives and will always be in our prayers. Thank you DATRI for finding this match and gifting our daughter back to us.”

Also present at the event were Dr. Nirav Buch, Pediatric Hematologist & Oncologist, Team DATRI, patients and their families who appealed to the public to come forward to Gift lives.

It is appalling to know that only 33,118 donors are registered with DATRI as potential blood stem cell donors from Guja-rat, which has a population of 68,247,188. This definitely calls for more awareness on the importance of saving lives through blood stem cell donation for blood cancer patients.

Bharath Saves Barathy!

Bharath Surya Devara, a 25 year old medical student met Barathy P B from Tamil Nadu for the first time after donating his Blood Stem Cells to save her from Blood Cancer.

Barathy, who hails from Coimbatore, is a mother of two children. Her world shattered when she was diagnosed with Acute Lymphocytic Leukemia (ALL), a severe form of Blood Cancer in 2017. Dr. Bharath registered during a Donor Registration Drive conducted by DATRI at his college in Vijayawada in 2017. He became a match in February 2018 and agreed for the donation.

With intense emotions, Barathy said, “I do not have words to express my thanks to Dr. Bharat; he has gifted my kids their mother. I must thank DATRI for finding this match and gifting me back to my family.”

Dr Bharath Surya Devara said, “The Gift of Life is the most treasured gift of all. Everyone must come forward to register as a volunteer Blood Stem Cell donor. The feeling of meeting the person who is alive because of you is extremely elating. Today I feel like I have a blood-sister and an extended family”.

Dr. Krishna Reddy, Medical Oncologist at Manipal Hospital, family members of the donor and the recipient were present at the occasion.

It is appalling to know that only 53,074 donors have registered with DATRI as potential blood stem cell donors from Andhra Pradesh, which has a population of nearly 5 Crores. This definitely calls for more awareness on the importance of saving lives through blood stem cell donation.

DATRI in News

3

Malayala Manorama, Kochi, 23rd January 2019

Andhra Pathrika, VIjayawada, 17th March 2019

New Indian Express, Vijayawada, 17th March 2019

Eenadu, Hyderabad, 13th March 2019

Tribune Jalandhar edition - 20th March 2019

Punjabi Spokesman, 22nd March 2019 Hindustan Times, New Delhi, 18th March 2019

Trinity Mirror, Coimbatore, 17th March 2019

Visit “DATRI IN NEWS” section in our website for more: https://datri.org/gallery/

DocTalk

4

Dr Mammen Chandy MD, FRACP, FRCPA, FRCPDirector, Tata Medical Center, Kolkata.

Is it safe to donate Hematopoietic Stem Cells for someone who needs a transplant?

(A series of articles on Bone Marrow Transplant by Dr. Mammen Chandy, who is the pioneer in developing the field of hematology and bone marrow transplantation in India. This is part 2 of the series)

What happens after finding an HLA Matched Donor? Once the decision to have a bone marrow transplant has been made, the next step is to perform HLA typing on the patient, sibling and parents. The ideal donor is a full six antigen HLA A, B and DR matched related donor. For unrelated donors a high resolution HLA typing by DNA sequencing is done and the donor should have 10/10 or at least 9/10 match with the recipient.

Bone marrow Transplantation can be done even if the donor and recipient are not ABO blood group matched unlike solid organ transplants. If there are no matched siblings who can serve as a donor then an extended family search can be done in which parents or cousins are tested but the probability of finding a donor is small except where the parents are consanguineous. If there is only one child then the family can plan to have another child and HLA typing can be performed on the DNA sample that has been obtained from a chorionic villous sample. When this child is born either a cord blood transplant can be done or a regular transplant can be done when the baby is 2 years old.

Conditioning

After admission and insertion of Dual Lumen Catheter, it is used thereafter for blood tests, transfusions and administration of medication and fluids. It is removed when the patient is ready to go home. The catheter is dressed twice weekly and flushed with heparin saline when not in use.

The patient is transferred to the bone marrow transplant unit prior to initiation of the conditioning regimen and is kept in the positive pressure HEPA (High efficiency particulate air) filtered unit till engraftment has occurred and the absolute neutrophil count is over 500/cumm. The HEPA filters are high efficiency filters with a size of 0.3 microns with a trapping efficiency of 99.97%. The air quality is monitored using air quality monitors and air pressures are assessed using a pressure-testing device. Settle plate cultures are also done every month to look for microbiological contamination.

Conditioning refers to the treatment given to the patient, which permits engraftment of donor marrow and involves the creation of space by destroying the patient’s own marrow (cytoreduction) and immunosupression to prevent rejection.

The choice of conditioning regimen for a given patient is dictated by the underlying disease and donor characteristics. Most transplant centers use chemotherapeutic agents alone for conditioning; Busulphan orally at a dose of 16 mg/Kg over 4 days is administered followed by Cyclophosphamide 50 mg/Kg for 2 - 4 days. Intravenous busulphan is better tolerated and has more predictable pharmacokinetics. Total body irradiation 12 Gy over 3 days is often used for transplant conditioning in patients with acute lymphatic leukemia. In patients with a high risk of rejection such as Thalassaemia, Anti Lymphocyte Globulin may

be added to the conditioning regime. In diseases such as aplastic anemia, where the rejection rate is increased, fludarabine is added to the conditioning regime. Fanconi’s anemia because of the increase sensitivity to chemotherapeutic agents requires special conditioning with reduced doses. Older patients with co-morbidities are nowadays conditioned with non-myeloablative or reduced intensity conditioning (RIC) regimens. Here drugs such as Fludarabine are used to suppress the patient’s immune system enough to allow engraftment of donor cells and this suggests that it is not necessary to destroy the marrow and create “space” for the donor stem cells. Once the patient has completed conditioning if for any reason it is not possible to infuse the donors’ stem cells then the patient may not survive.

Let’s get to know more on the transplant procedures in the upcoming series.

Transplant Procedure

Hear it from a Doctor

Series of testson the patientafter admission

Insertion of DualLumen Hickman catheter under anesthesia

Conditioning inBone Marrow Transplant Unit

Bone MarrowTransplant onthe Patient

Peripheral Blood Stem Cell Donation(Pbsc)

Bone MarrowDonation

(Or)

Donation(Two Ways)

15

DATRI turns 10!

DATRIFOUNDATION DAY

FIRST DONATION FACILITATED

FIRST DONOR RECIPIENT MEET

(DRM)

FIRST WOMAN DONOR FROM DATRI

2009

2011

2012

2013

DATRI’S FIRST AWARD AS BEST NGO

2017

Ajit Kumar Das Donated on 26th April

Nikhil Kumbhar met his recipient Hrishi

Ingwale on 5th November

Meenakshi VDonated on 05th

September

“Best Healthcare NGO - 2017” award by

World CSR Congress

DATRI was established on 3rd March

FIRST BONE MARROW DONATION

2015 Naval Chaudhary Donated on 7th May

Donors Registered

4,04,050+

Donations Facilitated

550+

Drives Conducted

3370+

Volunteers Joined

500+

DATRI AT PRESENT

of Lifesaving

Celebrating

YEARS

5

It happened @ DATRI

Walkathon at Besant Nagar Beach,Chennai, 3rd February 2019

Donor Recipient Meet at Surat, 3rd February 2019

Donor Recipient Meet at Vijayawada,16th March 2019

Donor Recruitment Drive at Kutuhal, Nagpur, 11th February 2019

Film Director Jude Anthany Joseph, Actress Saniya Iyappan, RJ Anannyeah Alex registered with DATRI along with 617 others at Cochin University of Science and Technology (CUSAT), 22nd January 2019

Volunteers’ Meet, Ahmedabad,5th March 2019

Volunteers’ Meet, Surat, 6th March 2019

Donor Recruitment Drive at ‘Chennai Demo Day’,Chennai, 16th February 2019

6

7

Donor Recruitment Drive at ‘Mall of Joy’, Kerala, 13th March 2019

Donor Recruitment Drive at Transworld Branch Offices at Mumbai | Gujarat | Tamilnadu | Kerala | Andhra Pradesh | West Bengal. February 2019

Donor Recruitment Drive at IIT Mumbai,16, 17th March 2019

Donor Recruitment Drive at Transworld, Dubai, 26th March 2019

Donor Recruitment Drive at TKM College of Engineering, Kollam, 31st March 2019

Donor Recruitment Drive at Frankfinn Institute of Air Hostess Training, Pune, 15th March 2019

Donor Recruitment Drive, at SRKI college, Surat, 13th March 2019

It happened @ DATRI

When an individual comes forward to register as a blood stem cell donor, he/she becomes a potential life-saver. Anyone between the age of 18-50 years can register as a blood stem cell donor. Register today and take the first step to save a life. The registration process is simple as below:

Registration Process

Attend an Awareness Session

Fill up an Application Form

Sign a Consent Form

Buccal SwabProcedure

HLA Typing Eligibility:18 to 50 years

Your Donation ofINR 1800 will help us to carry

out your HLA Typing

www.datri.org

www.datri.org

Donation ProcessIf an individual is found to be a match, there are two ways of donating blood stem cells i.e. Peripheral Blood Stem Cell (PBSC) donation and Bone Marrow Harvest. For a PBSC donation, once the donor completes the master health check-up, he/she will be given an injection called Granulocyte-Colony Stimulating Factor(GCSF) for 5 days to stimulate the blood stem cells production and bring them from the marrow to the blood stream. Blood Stem Cells will be collected in a 4-5 hours of out-patient procedure called Apheresis. For a Bone Marrow Harvest, the marrow will be collected from the hip bone of the donor under general Anesthesia. Here is a visual representation of the procedure.

The chances of getting a lifesaver for a patient suffering from fatal blood disorder is 1 in 10000 to 1 in over ten lakhs. Once found as an HLA matched donor, you could be the last chance of survival for the patient. Be a Blood Stem Cell Donor and give someone a second chance at life.

Testimonials

Vipin Gupta Volvo India Private Limited Bangalore

“We do so many things in life to make others feel proud of us. This is something which makes me proud of myself.”

Dhamodharan Works at Amazon Coimbatore

“I really feel happy. To be frank, now I feel I am worth. I am proud of this beautiful unforgettable act in my life.”

Ajasudheen Assistant Professor Ernakulam

“After this blood stem cell donation, I realized that I have the power to save a life.Giving a life to someone is not a simple task. I am proud that I could do it.”

PERIPHERAL BLOOD STEM CELL DONATION

(PBSC)BONE MARROW

DONATION

(OR)

TRANSPORTATION

4

3

DONATION(TWO WAYS)

MASTER HEALTH CHECK UP

2

TRANSPLANTATION

5

VERIFICATION OF MATCH

1

8

INDIA

Delhi

Gujarat

Maharashtra

Andhra Pradesh

577

4,392

210

89

365Telangana

66

485

52

DATRI Dashboard

9

(January - March 2019)

Statewise Number of Donors Registered

January - 18 March - 12February - 15

Donations

Life Savers Added & Donations Facilitated

Goals 2019

842Tamil Nadu

Kerala

Karnataka

Andhra Pradesh

West Bengal

Maharashtra

Gujarat

Delhi

TamilNadu

Kerala

Karnataka

WestBengal

Haryana 26

Punjab

Chandigarh 19

Colombo 8

79

This year DATRI intends to recruit 1,00,000 donors. The cost of HLA typing for all the donors will amount to INR 18 crores. Therefore, to continue its lifesaving mission DATRI is in need of monetary support from the socially responsible companies and sensitive individuals like you. Donation Now. Gift a Life!

Let’s make this possible! Register as Blood Stem Celldonors and donate money to support DATRI’s life saving mission.

www.datri.org

www.datri.org

Registrations

Muscat 8

Doha 6

Jan’19

1,140

580

1,273

Feb’19 Mar’19

To Donate please visit: datri.org/donate-now/

Talk to us

Do get in touch with us with your comments, feedback and suggestions on this edition as well as on topics / information that you would like to read about in future editions. Write to us at marcom@datri.org. We are looking forward to your inputs.

1207 -1208, 12th floor, Ticel Bio Park Phase 2, CSIR Road, Taramani, Chennai - 600113, India. Phone : +91 44 2254 1283, +91 44 4079 5300

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www.facebook.com/datriworld www.twitter.com/datriworld https://www.instagram.com/datriworld

www.datri.org/join https://in.linkedin.com/company/datri-blood-stem-cell-donors-registry

Donations to DATRI are exempt from taxunder section 80G of the Income Tax Act.

Account Name : DATRI Blood Stem Cell Donors RegistryAccount No : 000584000001189 Bank Name : Yes Bank LtdBranch Name : Uthamar Gandhi Salai, Nungambakkam, ChennaiIFSC Code : YESB0000005 Swift Code : YESBINBBXXX

It costs DATRI Rs. 1800/- to add a donor to the registry. DATRI is targeting to recruit 1,00,000 donors this year, to save more lives. We are in urgent need of funds and your monetary support will help our cause.

Paytm

Scan to Donate Money

Online payment

http://datri.org/donate-now/

This includes both Collection and Transplant Centers that DATRI has worked with until now.

* AIMS, Kochi* Apollo Hospitals, Ahmedabad, Chennai, Delhi, Kolkata, Hyderabad * ACIBADEM University Hospital, Istanbul* ARTEMIS Hospital, Gurgaon* Adana Acibadem Hospital, Turkey* AOUI Verona, Italy* AMRI Hospital, KI* Ampang Hospital, Singapore* Asiri Central Hospital, Srilanka* Baylor University Medical Center, USA* Barnes Jewish Hospital* BGS Global, Bangalore* Birmingham Children's Hospital, Birmingham, UK* BL Kapoor Hospital, Delhi* CMC Vellore, Ludhiana* City of Hope, Los Angeles, USA* Cancer Institute, Adyar* Deenanath Mangeshkar Hospital, Pune* Dr.L.H Hiranandani Hospital, Mumbai* Direttore U.O.C. Onco-ematologia Pediatrica,Verona, Italy* Duke Medical Centre, NC, USA* Fortis Memorial Research Institute, Gurgaon* GCRI, Ahmedabad

* Hospital St Louis* Hammersmith Hospital, London* HCG, Bangalore* Hiranandani Hospital, Mumbai* Hematology Oncology & SCT and Research Center, Iran* Jaypee Hospital, Noida* Kings Hospital, London* Medanta-The Medicity, Gurgaon* Meenakshi Mission Hospital & Research Centre, Madurai* Manipal Hospital, Bangalore* Medical Park Bahcaelievler Hospital, Istanbul* M D Anderson Cancer Center, USA* MIOT Hospital, Chennai* Mayo Clinic Rochester, NY, USA* Medipol University, Turkey* Medical City Dallas Hospital, Dallas, USA* Narayana Health, Bangalore* Indo American, Hyderabad* KIMS Hospital, Hyderabad* Kovai medical Center and Hospital, Coimbatore* Nanavati Speciality Hospital, Mumbai* Kokilaben Dhirubhai Ambani Hospital & Medical Research Institute, Mumbai* Malabar Cancer Centre, Kerala

* Nawaloka Hospital, Srilanka* University Hospital of Cleveland, OHIO, USA* University College Hospital, London* Sir Ganga Ram Hospital, Delhi* Sisli Kolan International Hospital, Turkey* PD Hinduja Hospital, Mumbai* PGIMER, Chandigarh* Queen Elizabeth Hospital, Birmingham, UK* Rajiv Gandhi Cancer Institute, Delhi* Rosewell Park Cancer Institute, NY, USA* Royal Manchester Children’s Hospital, UK* Royal Melbourn Hospital, Australia* Royal Brisbane and Women’s Hospital, Australia* Sahyadri Superspeciality Hospital, Pune* Sterling Hospital, Ahmedabad* SRMC, Chennai* Southampton, Hampshire, UK* TMC Hospital, Kolkata* TMC Hospital, Mumbai* TCH The Children's Hospital, Boston, USA* UCSF, San Fransisco, USA* Vienna University Hospital, Austria* North Side Hospital, USA* Prince margaret Hospital, Canada* Raffles Hospital, Singapore* St. Vincent Hospital, Sydney* University Hospital of Wales, Cardiff, UK* Yashoda Hospital, Hyderabad

www.datri.org

www.datri.org

Vipul Chaudhari, 5 years,

Diagnosed with Thalassemia Major

#SaveVipul

Kurmanath Sabbavarapu, 11 months,

Diagnosed with Genetic Mutation

#SaveKurmanath

Arjit Singh,26 years,

Diagnosed with Chronic Lymphocyte

Lymphoma (CLL)

#SaveArjit

Liyna Anwar, 29 years,

Diagnosed with Leukemia

#SaveLiyna#SaveKhyatiba

Khyatiba Narendrabhai Gohil, 2.5 years,

Diagnosed with Thalassemia Major

Patient’s Appeal

Our Hospital Partners