The South African Bone Marrow Registry notes with sadness the passing of Professor Jon van Rood. (Official obituary)

Jon van Rood had a special interest in the HLA typing of the Southern African populations and encouraged Professor Ernette du Toit in the founding of the South African Bone Marrow Registry.

He was a guest of honour at the 6th International Donor Registry Conference of the World Marrow Donor Association which was hosted in 2006 Cape Town by the SABMR. At this meeting he was the recipient of the Shirley Nolan Award, delivering the Shirley Nolan Lecture.

His fondness for HLA typing was matched only by his fondness for sailing and it was almost mandatory for visitors to his laboratory to be taken sailing. When SABMR asked him for a favourite photograph to illustrate his lecture, he immediately supplied one of him on his boat!

He will leave a void, both personal and academic.

In December 2016, the South African Bone Marrow Registry launched its “Give a little, Save a Life” fundraising campaign. The campaign ran until 28th February 2017 and the winners were announced in March 2017.

The purpose of the campaign was to raise funds to upgrade the HLA typing of donors already on the database who joined before the implementation of improved (molecular) testing on all new recruits.

Thank You to all the participants and Congratulations to the winners:

• Kevin Ramsamy
• Carl Normann
• Cornelia Oberholzer
• Lynette Stroud
• Jono Marcus
• Guy (Jonathan) Kenyon

The real winners, though, will be the patients we serve.

Any improvement in the HLA typing of the donors on the SABMR database, results in a more informative search result and a faster time to identification of a donor for a patient in need of a matched unrelated stem cell transplant..

‘An Uncommon Gift: The story of the South African Bone Marrow Registry and the lives changed by stem cell donation’ launches at the SABMR’s 25th anniversary celebration on 29 September 2016.

CAPE TOWN – The South African Bone Marrow Registry (SABMR) was established in 1991 to provide compatible unrelated bone marrow donors for South African patients with life-threatening blood disorders. To date, this non-profit organisation has facilitated stem cell transplants for hundreds of patients in South Africa.

‘We believe our stories, knowledge and experience should be shared’
To mark 25 years, the SABMR decided to collate its journey thus far in book form. ‘At the SABMR we believe that our stories and the knowledge and experience we’ve developed over the years should be shared with other organisations working in the non-profit sector, as well as within the South African civil community,’ says SABMR Medical Director Dr Charlotte Ingram. ‘By sharing our history and our patient and donor stories, we believe we will engage with many more South Africans who will be encouraged to become donors and help us grow our reach, both locally and internationally. This book, showcasing the SABMR’s two-and-a-half decades of commitment and work, gives us the opportunity to do just that.’

Zolani Mahola, lead singer of Freshlyground and a supporter of the SABMR, lent her voice to the book. ‘I registered as a donor after a friend was diagnosed with a bone marrow disorder,’ she says. ‘If we can help each other, why not? I feel it’s almost a civic duty: there are so many things we could do to assist others that might put us way too far out of our comfort zones, but this is something we can do and we should do. It would be an honour for me to have even a chance of saving someone’s life. That’s not something you get every day. That’s really being of service.’

A book to inspire
An Uncommon Gift includes the SABMR’s history, information on the donor search process, aspects of stem cell donation, and comment from those involved in a bone marrow transplant: donors, stem cell couriers, doctors and nurses, the staff of the SABMR, their network of international registries, fundraisers and recruiters such as The Sunflower Fund, the SABMR’s key recruitment partner.

This inspiring book shares many moving stories of the SABMR’s patients. Readers will meet men and women who are grateful to be seeing their children and grandchildren grow up, teenagers who recovered and are living their dreams, and little children who defied medical odds and are now thriving at school.

Included is a selection of the heartfelt letters written by bone marrow recipients to their anonymous donors. As one wrote, ‘He has given my siblings a brother, my children a father, and my wife a husband.’ ‘I have a future again, I can make plans again, I can again allow myself to dream, I now notice and appreciate things that I previously took for granted,’ wrote another. A family wrote, ‘There are not enough words to describe how eternally grateful we are for your unselfish act of kindness, to give some of yourself to save a life you don’t even know.’ Another patient summarised the process in a thank-you letter to his donor, ‘bone marrow transplantation is much more than a physical miracle. It is a bonding of humanity.’

The book will be available on the evening of the Book Launch and afterwards via the SABMR office, write to: admin@sabmr.co.za.

Dr Charlotte Ingram started as Medical Director of the SABMR in April 2016.

CAPE TOWN – Dr Charlotte Ingram began as Medical Director of the South African Bone Marrow Registry (SABMR) in April 2016, following the retirement of SABMR co-founder Professor Ernette du Toit. A haematologist, Dr Ingram served as Medical Director of the South African National Blood Transfusion Service (SANBS) for five years prior to this appointment.

‘We are here to save lives’
“What the South African Bone Marrow Registry is here for is to save lives. That’s the ultimate goal,” she states. “If we can get stem cells to a patient in need, it’s often a life-saving intervention.”

Dr Ingram praises the organisation’s achievements: “The SABMR is currently performing very well. Professor du Toit built the registry to where it is, and we would like to develop it further.” Although small compared with registries in Germany and the USA, the SABMR contributes significantly to the world database of stem cell donors in terms of phenotype, ranking in the top three for the relative percentage of unique HLA split phenotypes of stem cell donors. Yet its growth would bring widespread benefits: “If we had more registered donors, we would be able to help save not only more lives locally, but help more people around the world,” she says.

A passion for helping others and sharing knowledge
Dr Ingram, who describes tissue typing as one of her passions, has served on the boards of both the SANBS and the South African Tissue Banking Association (SATiBA), a group that compiled standards for stem cells, and is a member of the SANBS HREC (Human Research and Ethics) committee. She spent 5 years managing HLA typing laboratories and has more than 10 years’ experience in the cryopreservation of peripheral stem and mononuclear cells.

She was CEO for the clinical trial laboratory division of the Wits Health Consortium, a division of the University of Witwatersrand, and previously headed up a molecular diagnostics unit for a business initiative for the sub Saharan African region. Her interest in grant-funded projects – helping laboratories around Africa become accredited and train staff – has taken her to Rwanda, Kenya, Ghana and Gabon, among other countries.

Dr Ingram’s qualifications include both a laboratory (haematopathology) and a clinical haematology sub-specialty FCPath Haem (CMSA) MMed (Haem) Wits. In addition she has a MBA from Wits Business School.

For many years she was actively involved in HIV research and management of HIV disease and anaemia in the antenatal units of the Johannesburg hospital complex, including Chris Hani Baragwanath Hospital. Her involvement with the REDS III study in South Africa started in July 2011, initially on the working group for the obstetric haemorrhage study. Dr Ingram was the project director and in country principal investigator (PI) for the REDS III SANBS study until she left the SANBS when she handed this role over to Dr Ute Jentsch. Since 2013, she was also the principal investigator for the SANBS CDC /PEPFAR blood safety and strengthening health systems programme for SANBS in South Africa.

The SABMR’s new to-do list
Applying her years of business experience to the running of this non-profit organisation, Dr Ingram plans to increase and continue to upskill staff, implement more management systems, and find alternative sources of revenue for financial sustainability and build and maintain key relationships with stakeholders. Externally, she aims to raise public awareness of the service the SABMR provides and its need for support, both financially and in terms of donor registration, and to increase the ethnic diversity of the donor pool.

Dr Ingram would like to see the donor base in South Africa increase to at least 100,000 from the current 71,971. ‘The very high genetic diversity in South Africa makes it difficult to source a donor from some of the less diverse phenotypic registries, hence making it important for South Africa to increase our own donor base and to make it more representative of the South African population by increasing black donors.’ she says. Although the SABMR has grown its black donor database during the past year from 6% to 7.5% – with black donors comprising 5,379 of the total (figures from first quarter 2016 statistics), we should aim to achieve a 10% black donor pool, then to increase this figure steadily through publicity campaigns and registration drives in association with The Sunflower Fund, which recruits bone marrow donors nationwide.

Many members of the public remain unaware that, owing to medical advances, bone marrow donation no longer needs to involve a general anaesthetic and stem cell extraction from the bones: today, the donor is linked to a machine with an intravenous line for approximately 6 hours and the stem cells are filtered out of his or her blood. In time, newer technology such as cheek swabs will make donor registration simpler too, Dr Ingram reports.

However, basic facilities for patients are still lacking, she feels. “South Africa is not doing enough for transplants,” she says. “There needs to be more access to facilities for the diagnosis and treatment of blood diseases. We need more awareness outside of transplant centres to ensure patients are referred for treatment to these transplant centres, that need to be more supported and adequately staffed, in government and private hospitals.”

“The SABMR can make a difference to people’s lives, to children’s lives. In this position I can give back,” says Dr Ingram, who recently moved from Johannesburg to Cape Town with her husband, an entrepreneur, and their two Bouviers. In her free time she enjoys being in the bush and nature trips, “camel” riding, cycling and visiting the Cape wine estates.

About the SABMR’s work
Based at Groote Schuur Hospital, the SABMR is Africa’s only bone marrow registry supporting an active transplant programme. Only a minority of patients needing a bone marrow transplant will find a matching donor in their family. For over 70% of patients, their only hope is to find a donor identified by the SABMR. However, the chance of finding a compatible unrelated donor is approximately one in 100,000. To increase chances of finding a match for local patients, the SABMR partners with 75 other international registries.

Professor Ernette du Toit, who has dedicated her career to helping save the lives of South Africans with leukaemia and other blood diseases, retired at the end of March 2016 after 25 years as Head of the SABMR.

‘It’s magical what we can achieve’
The fact that she has helped save lives is Professor du Toit’s most valued achievement. Since 1997, 380 unrelated transplants (where the donor is not related to the patient) have been performed in South Africa, thanks to the work of the SABMR. Ninety-nine of the donors were from the SABMR, the rest from overseas registries. ‘A bone marrow transplant is a desperate procedure for people who are in danger of losing their lives. It has a success rate of just over 60%, and for the ones it’s successful for, it’s fantastic,’ she explains. ‘To me, it’s magical what we can achieve. Former patients have fulfilled their dreams – one is now a yacht captain who sails round the world – and we were able to help with that.’

‘It’s such unique work,’ Professor du Toit explains. ‘You’re actually destroying an individual’s whole immunological system and replacing it with one from somebody who’s like an identical twin, found in the general population. It’s a tremendous challenge to the clinicians who achieve this, and to us to find the match.’ Finding a matching donor is the first hurdle; the next is the transporting the stem cells, often from overseas, to the patient: ‘We facilitate bringing the bag of stem cells by personal courier from the donor to the bedside of the patient within 72 hours, and it’s planned like a military operation.’

She praised her staff, saying, ‘many have been with me for twenty years or more, and we’ve really grown the registry together.’ Indeed, each procedure requires the combined efforts of many, from doctors and SABMR administrative staff to ordinary people who wanted to help others and registered as bone marrow donors.

From the first heart transplant to bone marrow transplants
Born on a farm near Montagu in the Western Cape, Ernette du Toit graduated with an MBChB from the University of Cape Town (UCT) in 1960. In 1967 she was working as an assistant in the Laboratory for Tissue Immunology (LTI) at Groote Schuur Hospital, which performed the tissue matching for the world’s first heart transplant – an event that launched her career. ‘It was a case of being in the right place at the right time,’ she says. She ran the laboratory while her boss travelled the world on speaking engagements, and in 1979, after obtaining her doctorate in immunology from UCT, she was appointed Head of the LTI.

Professor du Toit has worked in the fields of tissue matching for organ transplantation, genetic factors and disease associations, forensic case work and paternity testing. At the LTI, she instituted paternity testing in South Africa on a formal scale: these same tests were used by her team for matching in organ transplantation, and are now used in bone marrow transplantation. In 1999, under her guidance, the LTI received accreditation from the European Federation for Immunogenetics (EFI), which meant it ranked alongside similar facilities anywhere in the world and was able to support the level of tissue typing required for the SABMR. Her research activities have included unrelated stem cell transplantation in South Africa, and analysis of the genetic profiles of the various ethnic groups in Southern Africa, including the San and Khoi.

Following international advances in the treatment of bone marrow disorders, Professor du Toit pioneered the establishment of the non-profit South African Bone Marrow Registry (SABMR), co-founding the organisation in 1991 with the late Professor Peter Jacobs.

About the SABMR’s work
Based at Groote Schuur Hospital, the SABMR is Africa’s only bone marrow registry supporting an active transplant programme, and has over 73,000 registered South African donors. ‘Only a minority of patients who need a bone marrow transplant will find a matching donor in their family. For over 70% of patients, their only hope is to find a donor identified by the SABMR,’ says Professor du Toit. However, the chance of finding a compatible unrelated donor is approximately one in 100,000. To increase chances of finding a match for local patients, the SABMR partners with the 75 other international registries.

Once established, the SABMR went from strength to strength. In 2006, the SABMR hosted the sixth international meeting of the World Bone Marrow Donor Association in Cape Town, where 35 international registries were represented.

Looking ahead
Dr Charlotte Ingram will take over the directorship of the SABMR in April 2016. Regarding the SABMR’s future, Professor du Toit says, ‘I hope more South African patients will get a chance to be transplanted.’ The SABMR finds local donors in only 25% of cases, she explains and since using an overseas donor is costly, many patients who cannot find a local donor will not be cured. The more local donors who register, the more lives the SABMR can save. ‘We need more representation from all the ethnic groups in South Africa, and we particularly need more black donors,’ she says.

A devoted mother and grandmother, Professor du Toit retired days before her eightieth birthday. She plans to retain links with the SABMR and possibly do charity work, read, tend to her garden, and attend events with her husband, Dr Len Anstey. She laughs, ‘I’ll go to all the concerts and exhibitions I haven’t attended because I’ve wanted to get up early for work!’