SOUTH AFRICAN BONE MARROW REGISTRY AR 2019/2020

THE 2019/20 ANNUAL REPORT OF THE SOUTH AFRICAN BONE MARROW REGISTRY

CONTENT S 4

STAFF HIGHLIGHTS GOODBYES & WELCOMES, MANDELA & WOMEN’S DAY: HERE’S WHAT THE SABMR STAFF GOT UP TO IN 2019

T

he South African Bone Marrow Registry (SABMR) was founded in Cape Town in 1991. The Registry provides a life-saving service to patients in South Africa and worldwide suffering from leukaemia and other blood diseases, whose only chance of survival is to undergo a bone marrow transplant. Each case is unique and complicated, and it is the task of the SABMR to search for, test, and procure an unrelated matched bone marrow donor in the case that a donor is not found in the patient’s family.

The Registry’s mission is to save lives and provide hope to patients in need. To further this mission, the SABMR’s staff works tirelessly to expand the South African donor database, create awareness around bone marrow, embrace evolving technology, and strengthen stakeholder relationships to the benefit of the community. The SABMR’s national database of over 73 000 donors continues to grow annually.

Today, the SABMR searches both locally and internationally for donors, thereby making collaboration with international registries and observation of universal standards of practice essential. An internationally recognised registry, the SABMR is a member of the World Marrow Donor Association (WMDA). The Registry has access to a global network of over 36 million donors through its participation with the WMDA. It was with some pride that the SABMR received recognition for its 2018 World Marrow Donor Day celebrations at the WMDA Working Group meetings last year.

The SABMR is currently the only WMDA accredited bone marrow registry in sub-Saharan Africa. The SABMR contributes to all facets of the registry value chain through the following services: donor recruitment, match searching, prescribed testing according to international and local standards, donor work-up and stem cell collection, and stem cell transport to the patient at the transplant centre.

5-16 FULL REPORT 5 LETTER FROM THE PARENTS OF A PATIENT

6-7 A GREAT YEAR FOR DONOR RECRUITMENT THE REGISTRY’S DONOR RECRUITMENT TEAM EXCEEDS TARGETS AND STRENGTHENS PARTNERSHIPS.

8-9 UPDATES FROM THE SUSTAINABILITY TEAM SPORTING FUNDRAISERS, A NEW GAUTENG BRANCH, PLUS MEET OUR NEW DONOR & SUSTAINABILITY EVENT COORDINATOR

It is a source of great satisfaction to stand at the head of the Board that governs this organisation, with its dedicated and committed staff.

DEREK AURET Chairman, SABMR Board

10-16 ALL THE FACTS AND FIGURES

17-22

STORIES

17 A MEETING TO REMEMBER TRANSPLANT RECIPIENT MEETS THE DONOR WHO SAVED HER LIFE

18-19 TRANSPLANT RECIPIENTS FIND DONORS FOR OTHER PATIENTS

“THE PURPOSE OF LIFE IS NOT TO BE HAPPY. IT IS TO BE USEFUL… TO HAVE IT MAKE SOME DIFFERENCE THAT YOU HAVE LIVED AND LIVED WELL.”

20 CATCHING UP WITH

NONHLANHLA MTSHALI

JOHANNESBURG NURSE AND BONE MARROW RECIPIENT SPREADS AWARENESS ABOUT HER SECOND CHANCE AT LIFE

21 SIXOXA NONHLANHLA MTSHALI

UMHLENGIKAZI KANYE NOMUNTU OWATHOLA UMNKANTSHA

22 DOUBLE DONATION WHEN THE CALL CAME TO SAVE A LIFE, HE ANSWERED — T WICE

23 A FAREWELL AFTER FIVE DECADES

BIDDING A HAPPY RETIREMENT TO THE REGISTRY’S LONGTIME DEPUTY DIRECTOR, TERRY SCHLAPHOFF

24-25 THE SABMR CELEBRATES

WORLD MARROW DONOR DAY

26 GLOBAL MEETINGS

NETWORKING FOR A BETTER TOMORROW

27 MEET AFRODADDY

OUR COVER STAR AND FATHERHOOD INFLUENCER

SENIOR EDITOR Dr Charlotte Ingram • EDITOR-IN-CHIEF Terry Schlaphoff • MANAGING CREATIVE DIRECTORS & ADDITIONAL PHOTOGRAPHY Johann M Smith, Digital Shelf Anje Rautenbach, Digital Shelf

CONTRIBUTORS Alicia Venter, Jane Ward, Veronica Borrill, Kamiel Singh, Clarice Cairncross, Catriona Ross, Nadia Chalkley, Terry Schlaphoff, SarahBelle Selig, Colin Galant

2020 SABMR.CO.ZA

T

his report is intended to highlight the SABMR’s annual milestones and demonstrate how we are creating value for all of our stakeholders, including our donors, patients, employees, and greater society.

The report reviews financial, operational, social, and governance aspects of the SABMR from the period 1 April 2019 to 31 March 2020.

The focal points of the Registry’s operating philosophy include long-term sustainability, risk mitigation, and a values-based culture centred on donors and patients. This year, the Registry shifted more focus to governance and strategic guidance with the establishment of an Audit and Risk Committee and a Clinical Governance Committee, the approval of a national roll-out plan, and the establishment of a Gauteng office.

2019/20 was the first full-year implementation of our Patient Assistance Programme, under which ten South Africans have received financial assistance for their transplants. The majority of the programme’s beneficiaries were in demographic groups other than white, including 40% Black, 30% Coloured or mixed race, and 10% Asian.

This year, we made major improvements to our online recruitment systems and met our demographic targets in order to be more representative of the country’s diverse population. As a result, the SABMR continues to become more self-sufficient and we are able to match more local patients with South African donors year after year. It was also one of the best years in the Registry’s history for grant funds and donations.

It would not be without the support of our donors, suppliers, and sponsors who give so selflessly that the Registry would have achieved the growth and success highlighted in this report and overcome the unique challenges we faced this year. External events like the COVID-19 pandemic continue to test the Registry’s traditional business model and assumptions about opportunities and risks.

This requires the organisation to be agile and for all staff to operate as a cohesive team rallied around one solitary goal: to save lives.

On behalf of the Board and the Executive Management, I must convey our appreciation to Veronica Borrill as Board Secretary for the efficient, professional, and dedicated services she provides to the Board and the SABMR as a whole. I am grateful to our Board members, managers, and all Registry employees for their support and commitment to the SABMR’s vision of giving the gift of life to fellow South Africans.

To our donors, who breathe life into our Registry, we thank you.

DR CHARLOTTE INGRAM Medical Director & CEO

2 19

S T A F F

H I G H L I G H T S

Here’s to another year of saving lives!

Below, catch up with the SABMR staff and see what we got up to in 2019.

GOODBYES & WELCOMES In 2019 we said farewell to two people, both of whom devoted years of outstanding service to the SABMR: Yvonne Lewin and Gill Bohlmann. Yvonne was a dedicated volunteer who managed staff and courier travel arrangements for the Registry for many years. Gill Bohlmann, who managed the accounts department for over a decade, retired from the SABMR in October and joined her family in Australia.

We welcomed several new staff members to the team, including Colin Galant (Financial Accountant), Clarice Cairncross (Donor Welfare Officer), Lerina Manuel (Administrative Assistant), Leandra Boyd (Bookkeeper), and Ndinae Muligwe (Donor Events and Sustainability Coordinator at our new SABMR office in Johannesburg).

For more information on Ndinae and our Johannesburg branch, visit page 9.

END-OF-YEAR FUNCTION, DECEMBER 2019 The SABMR staff celebrated another great year with a holiday function at Moyo, where we enjoyed a meal, played games, and exchanged gifts.

MANDELA DAY, JULY 2019 The SABMR staff volunteered our 67 minutes to paint a wall at the CHOC house in Sybrand Park, a home for young patients who are receiving oncology treatment at Red Cross War Memorial Children’s Hospital.

Due to rain, the team ended up spending that time packing care bags for CHOC house residents, but we returned on a sunny day to paint the wall.

WOMEN’S DAY, AUGUST 2019 The ladies of the SABMR were surprised by our Sustainability Manager Kamiel Singh with a Women’s Day party, where we were pampered with manicures, shoulder massages, sushi, and sparkling juice.

04

A N N U A L R E P O R T 2 0 1 9/ 2 0

The year’s activities, achievements, and progress.

FROM: THE PARE NTS OF A PATI ENT To everyone involved at the SABMR, We, as a family, would like to say the biggest THANK YOU to each one of you that was involved in finding the perfect match for our son earlier this year. I never met any of you personally, but I know what an integral part you all played in the success of his stem cell transplant.

Today is his 16th birthday – and we are filled with gratitude!

From starting the year off finishing a 7-month course of intense chemotherapy, to the transplant in Februar y – it is hard to believe how far he has come this year. He made the district water polo team in September and will be playing in the Nationals in December. He is currently away on his Grade 10 Karoo Challenge – where the children cycle, hike and beach walk a gruelling 550km over 18 days.

What a privilege and a blessing that he is able to participate in all this.

It really is the gift of life and a big hug to each and every one of you.

The Family

A GREAT YEAR FOR donor recruitment The Registry’s Donor Recruitment team exceeds targets and strengthens partnerships.

I

t was an exhilarating year for the SABMR’s Donor Recruitment team.

The department surpassed its annual recruitment target by 50 percent and has grown considerably in terms of capacity and staffing. The team now consists of four full-time national recruitment personnel and an additional officer focused specifically on Gauteng, Limpopo, and Mpumalanga provinces.

Check out some highlights below from the Registry’s 2019/20 donor recruitment.

SABMR SECURES WE DELETE BLOOD CANCER (DKMS) GRANT This year, the SABMR won a significant grant from We Delete Blood Cancer (DKMS) which funded international

06

training for two SABMR employees, awarded €25 000 for public relations and donor retention programming, and credited the Registry 2 500 free human leukocyte antigen (HLA) typing tests from the DKMS Science Laboratory.

For the first time in DKMS history a promotional award was announced for international cooperation so that even more patients worldwide can find their matching donor. The DKMS Global Collaboration Grant was inspired by the 25th anniversary of the World Marrow Donor Association (WMDA). With this award, DKMS wants to advance its global commitment by sharing knowledge and experience and providing resources to support the work of registries and donor centres from all over the world.

TRAINING WITH ANTHONY NOLAN REGISTRY (UNITED KINGDOM) In September 2019, the SABMR’s Donor Recruitment Officer Nadia Chalkley, visited the Anthony Nolan Registry in the UK, one of the world’s oldest and biggest registries, for benchmarking and training regarding their volunteering initiative, “Marrow.” Nadia attended the Registry’s annual volunteering conference and a number of staff meetings on donor recruitment logistics, social media outreach, and university relationships.

She returned to the SABMR with new knowledge and content to help diversify and strengthen recruitment in South Africa.

2 0 1 9/ 2 0

SUCCESSFUL DONOR RECRUITMENT DRIVES In 2019/20, the SABMR Donor Recruitment team participated in orientations and health weeks at several higher education institutions, including Wits University, North-West University, and Nelson Mandela University. The team collaborated with the Cape Peninsula University of Technology (CPUT) to train Haematology students and planned new annual events with the clinic staff at CPUT’s Department of Biomedical Sciences.

Donor Recruitment continues to grow its network of corporate, retail, and mining industry partners, the last of which contributed significantly to donor recruitment numbers in the 2019/20 year.

The team also worked closely this year with the Cancer Association of South Africa (CANSA), CHOC Childhood Cancer Foundation South Africa, and the

Western Cape Government to coordinate public awareness events. The SABMR’s donor recruitment courier partner, Courier IT, continues to be an indispensable partner for the Registry’s work. Amber van der Walt, the SABMR’s account manager at Courier IT, said, “As the saying goes: ‘If you want to go fast, go alone. If you want to go further, go with others.’ We are proud to be ‘going’ with the SABMR, helping them make a difference in people’s lives.”

RESPONDING TO NEW AND PERSISTENT CHALLENGES A primary objective of the Donor Recruitment team this year was to reassess donor applicant behaviour from demographic and psychological angles, with a particular focus on less educated and emotionally vulnerable audiences.

Regional and national marketing campaigns were then readjusted accordingly to better speak to the

needs of prospective applicants.

One persistent challenge for donor recruitment is the difficulty in reaching South Africa’s rural populations given the lack of both computer access and a basic medical understanding of bone marrow.

This year, to help ease this issue, the Donor Recruitment team adapted its online application processes, revamped the donor brochure, and ramped up physical and mobile marketing.

When COVID-19 hit South Africa, the Donor Recruitment team reached out to stakeholders to reassure them of the SABMR’s commitment to its mission.

The team also adjusted its marketing strategy to remind current and prospective applicants of the importance of the Registry’s work. Working closely with buccal swab depots and courier companies to minimise health risks for both staff and applicants, the SABMR was able to continue recruitment despite the challenges presented by COVID-19.

07

UPDATES FROM THE

SUSTAINABILITY team

T

he SABMR’s Sustainability Portfolio accounted for over 60 percent of the funding that came into the Registry in the 2019/20 financial year. The funds raised are necessary for the Registry to continue with important services such as donor recruitment, assistance for patients in need without sufficient financial resources, and retesting existing donors with newer, more advanced technology for a more accurate registry. The Sustainability Portfolio includes grants, fundraising events, crowdfunding campaigns, and savings, or nonmonetary donations to the Registry such as machinery, courier services, and business discounts. Under the guidance of Sustainability Portfolio Manager Kamiel Singh (pictured right), the SABMR pursues partnerships and financial support from a variety of sources, including but not limited to individual benefactors, schools, corporations, investment companies, and the National Lotteries Commission (NLC).

08

the SABMR, almost twice the initial goal of R50 000. All 22 cyclists were kitted out on race day with an SABMR-branded cycling kit, sporting the Registry’s signature turquoise blue.

947 RIDE JOBURG AND UPCOMING EVENTS In November 2019, 22 cyclists participated in the 947 Ride Joburg to raise money for the SABMR. Cyclist Christine Roos started the campaign on BackaBuddy.co.za to generate awareness about the Registry, and the campaign quickly gained momentum as more and more supporters signed up to race for the Registry. In the month of November, the campaign raised almost R90 000 for

Kamiel explained that the BackaBuddy campaign was a great example of how a single person can have a distinct impact.

“Crowdfunding really brings people together,” he said. “It creates unity under a common cause, and it just takes one person to start it.” Local media picked up on the campaign, which helped boost online awareness about the Registry and educate readers on what it means to be a bone marrow donor. For the 2020 race, the Sustainability team hopes to double the number of cyclists participating for the SABMR. As a result of COVID-19 restrictions, all events planned for mid-year 2020 have been postponed until later in the year. Given the success of the

“WE HAVE LIVES TO SAVE”

2 0 1 9/ 2 0

“THEY DON’T DO IT FOR THEIR OWN GLORY” SABMR’s 2019 Golf Day, the Registry will be hosting an extra golf day in the next financial year, including December 2020 and February 2021, each of which will feature drinks, lunch and supper, and an auction. The events currently scheduled for the next financial year are the 947 Ride Joburg on 15 November and a Golf Day in Gauteng in December. The October 2020 Benefit Concert, for which we were expecting over 1 000 guests, will be postponed until 2021 on account of COVID-19.

Ndinae is excited to work for an organisation that is driven by an altruistic purpose. “Joining the SABMR feels like I will be doing my day-to-day job, but with a more rewarding feeling. At the Registry, it’s not about the salary you get but about the lives you saved. It’s the satisfaction at the end of the day when a transplant happens, and you know you played a part in trying to save that life.”

Ndinae refers to the SABMR team as “unsung heroes.” “They don’t do it for their own glory,” she said. “They just think about other people.”

NEW GAUTENG BRANCH AND DONOR & SUSTAINABILITY EVENT COORDINATOR

GIVE A LITTLE, SAVE A LIFE The Registry’s annual Give a Little, Save a Life crowdfunding campaign occurs every December and January and raises funds for the Patient Assistance Programme (read more about the Patient Assistance Programme on Page 11). This year, the SABMR was supported by TV personality Frank Rautenbach, who promoted the campaign with a video appeal on his social media pages. The campaign successfully raised over R120 000 (approximately R110 000 offline and R10 000 online) and paid for a South African patient’s complete transplant process, including the worldwide donor search, stem cell collection, overseas courier, and transplant.

A major facet of the SABMR’s Sustainability Strategy for financial year 2021 is to expand national outreach by opening offices in Johannesburg and Durban. The Johannesburg office opened in early 2020, and the Durban office is scheduled to open mid-year. Both offices will house members of the SABMR staff and hold inventory of donor tests and other materials.

MAINTAINING FINANCIAL SECURITY IN UNCERTAIN ECONOMIC TIMES

Managing the Johannesburg office will be the SABMR’s newest hire, Donor and Sustainability Event Coordinator Ndinae Muligwe. Ndinae will be the point person for the Registry in Gauteng. Her key roles will be in fundraising, grants, events, and partnerships with corporations, schools, and universities. Ndinae will also assist with donor recruitment both online and through donor drives. Ndinae’s professional background is in marketing, having previously worked in business development and student welfare at the South African Institute of Professional Accountants (SAIPA).

In response to the COVID-19 crisis and its economic consequences, Kamiel explained that the Sustainability team is doubling its efforts to ensure that the SABMR has all of the funding it needs to run smoothly. One concern is that the SABMR’s annual funders, or benefactors that consistently donate to the Registry, may reassess where and how much they are donating given the current financial climate. “We’re looking at hectic times ahead for the world economy. What investors will be trying to decide is: will it be better to continue sustaining the charities that have always been in the pipeline, or do we hold onto that money, or do we put it somewhere else?”

Ndinae is kicking off her work for the Registry by reaching out to her network in the education sphere. She plans to focus first on developing the SABMR’s presence at universities, many of which she already has relationships with through her work at SAIPA. She hopes to introduce the Registry into universities across Mpumalanga, Gauteng, and Limpopo.

To be proactive, Kamiel has been in discussion with local and international investors to assess their priorities in the next financial year and is also pursuing new financial opportunities for the Registry.

Like the rest of the SABMR team, Kamiel understands how important it is that the Registry’s bandwidth is not affected by the ebbs and flows of the economy. As he put it, “we have lives to save.”

09

GOVERNANCE, FINANCE, & Sustainability

SABMR BOARD MEMBERS AS OF 31 MARCH 2020

ASSETS

CASH AND CASH EQUIVALENTS MR D. AURET OTHER CURRENT ASSETS (CHAIRMAN) LONG-TERM INVESTMENTS PROPERTY, PLANT AND EQUIPMENT DR C.F. INGRAM CURRENT LIABILITIES NET ASSETS CEO AND MEDICAL DIRECTOR

PROGRAMME SERVICES FUNDING SOURCES FUNDING SOURCES GRANTS AND DONATIONS FUNDING FUNDING SOURCES SOURCES 4 423 053 PROGRAMME SERVICES5 328 060 PROGRAMME SERVICES PROGRAMME PROGRAMME SERVICES SERVICES INVESTMENT INCOME 2 724 734 1 175 842 GRANTS AND DONATIONS GRANTS AND DONATIONS GRANTS GRANTS AND AND DONATIONS DONATIONS OTHER GAINS 1 459 210 INVESTMENT INCOME 1 495 660

DR R. CROOKES MS J. HARIRAM OPERATING AND VALUE DISTRIBUTION DR S.D. MOODLEY MANAGEMENT, PUBLIC LIASON AND FUNDRAISING DR B. MTUKUSHE DONOR RECRUITMENT PROFESSOR N. NOVITZKY PATIENT ASSISTANCE PROGRAMME DR C. POOLE REGISTRY DEVELOPMENT DR M. VAITHILINGUM STAFF RECRUITMENT

•

(DEFICIT)/SURPLUS FOR THE YEAR

2020

13 894 949 10 746 329 CURRENT LIABILITIES CURRENT LIABILITIES CURRENT CURRENT LIABILITIES 11 817LIABILITIES 547 19 074 390 NET ASSETS NET FUNDING SOURCES NETASSETS ASSETS NET ASSETS

FUNDING SOURCES MRS T. SCHLAPHOFF

PROGRAMME SERVICES DEPUTY DIRECTOR GRANTS AND DONATIONS INVESTMENT INCOME MR D. COHEN OTHER GAINS

ASSETS CASH AND CASH EQUIVALENTS ######### ######### OTHER CURRENT ASSETS ASSETS ASSETS ASSETS ASSETS 4AND 256 175 EQUIVALENTS 7 397 112 LONG-TERM INVESTMENTS CASH CASH CASH AND CASH EQUIVALENTS CASHCASH AND7AND CASH CASH EQUIVALENTS EQUIVALENTS 494 691 3 021 727EQUIPMENT OTHER CURRENT ASSETS PROPERTY, PLANT AND OTHER CURRENT ASSETS OTHER OTHER CURRENT CURRENT ASSETS ASSETS 12 674 997 18 118 LONG-TERM INVESTMENTS CURRENT LIABILITIES065 LONG-TERM INVESTMENTS LONG-TERM LONG-TERM INVESTMENTS INVESTMENTS 1 286 633 1EQUIPMENT 283 815 PROPERTY, PLANT AND PROPERTY, PLANT AND NETPLANT ASSETS PROPERTY, PROPERTY, PLANT ANDEQUIPMENT AND EQUIPMENT EQUIPMENT

5 328 060 1 175 842 1 495 660 3 888 934

MANAGEMENT, PUBLIC LIASON AND FUNDRAISING 9 851 693 OPERATING AND VALUE DISTRIBUTION OPERATING AND VALUE DISTRIBUTION OPERATING OPERATING AND AND VALUE VALUE DISTRIBUTION DISTRIBUTION 9 851 693 7LIASON 813 791 DONOR RECRUITMENT 2 332 909791 MANAGEMENT, PUBLIC AND FUNDRAISING 9 851 693 7 813 MANAGEMENT, PUBLIC LIASON AND FUNDRAISING 99851 MANAGEMENT, MANAGEMENT, PUBLIC LIASON AND FUNDRAISING FUNDRAISING 8519693 693 851 693 77813 8137791 791 813 791 2 332 909 PUBLIC 1 LIASON 284AND 712 DONOR RECRUITMENT 2909 332 909 1 2 1712 284 PATIENT ASSISTANCE PROGRAMME 226 611712 DONOR RECRUITMENT 2 332 284 DONOR DONOR RECRUITMENT RECRUITMENT 2 3322 909 332 909 1 2841 712 284 712 2 226 611 DEVELOPMENT 216 069 PATIENT ASSISTANCE PROGRAMME 2611 226 611 216 216 REGISTRY 621 762069 PATIENT ASSISTANCE PROGRAMME 2 226 069 PATIENT PATIENT ASSISTANCE ASSISTANCE PROGRAMME 2 2262 611 226 611 216 069 216 069 621 762 PROGRAMME 633 359 REGISTRY DEVELOPMENT 621 762 63395 633 STAFF RECRUITMENT 251359 REGISTRY DEVELOPMENT 621 REGISTRY REGISTRY DEVELOPMENT DEVELOPMENT 621762 762 621 762 633359 359 633 359

7 813 791 1 284 712 216 069 633 359 44 867

INVESTMENT INCOME INVESTMENT INVESTMENT INCOME INCOME3 888 934 3GAINS 726 999 OTHER OTHER GAINS OTHER OTHER GAINS GAINS OPERATING AND VALUE DISTRIBUTION

95 251 STAFF RECRUITMENT STAFF RECRUITMENT STAFFSTAFF RECRUITMENT RECRUITMENT

44 867

*(DEFICIT)/SURPLUS FOR THE YEAR

(2 794 230) 1 895 (DEFICIT)/SURPLUS FOR THE698 YEAR (DEFICIT)/SURPLUS FOR (DEFICIT)/SURPLUS (DEFICIT)/SURPLUS FORTHE FOR THEYEAR YEAR THE YEAR

20 000 000

20 000 000 2020000 000 00020 000 000 000

15 000 000

15 000 000 1515000 000 00015 000 000 000

10 000 000

10 000 000 1010000 000 00010 000 000 000

5 000 000

5 000 000 5 5000 000000 5000 000 000 CASH AND CASH EQUIVALENTS

-OTHER CURRENT ASSETS

*DEFICIT Explained 2020 FUNDING SOURCES

T

he deficit for the year arose due to exceptional expenditure PROGRAMME SERVICES required toGRANTS meetAND theDONATIONS strategic INVESTMENT INCOME OTHER GAINS objectives of the Registry. It mainly arose due to additional patients2020 assisted on our Patient Assistance VALUE DISTRIBUTION Programme, more donors recruited than anticipated, and the general expansion of operations.

The additional expenditure has been approved by the Board of Directors after careful consideration of available resources MANAGEMENT, PUBLIC LIASON AND FUNDRAISING and with conviction that it will result DONORthe RECRUITMENT in increased benefits in the long run and PATIENT ASSISTANCE PROGRAMME ultimately the mission of the REGISTRYsupport DEVELOPMENT RECRUITMENT SouthSTAFF African Bone Marrow Registry.

10

13949 894 94910 746 10329 746 329 13 13894 894 13 949 894 949 10 746 10 329 746 329 11547 817 547 19390 074 390 11 817 19 074 11 817 11 817 547 54719 074 19 074 390 390

4 423 053 2 724 734 4 423 053 5 3285060 328 060 44423 4234053 053 423 053 51328 5 060 328 459 210060 2 724 734 1842 175 842 22724 734 1 175 7242 734 724 734 13175 1 842 175 842 726 999660 1 459 210 1 495

ASSETS AND LIABILITIES 2020 • 2019

-

2019

4 256 175 7 397 112 7 494 691 3 021 727 ######### ######### ######### ######### ######### ######### ######### ######### 674 997112 18 118 065 4175 256 175 712 7112 397 44256 397 2564 175 256 175 7 3977 112 397 112 7 494 691 3 1 3 021 286 633727 1 283 815 77494 4947691 691 494 691 3021 0213727 727 021 727 12997 674 9971813 18065 118 894 949065 10 746 329 12 674 118 12 674 12 997 674 997 18 118 18 065 118 065 1 286 633 11 1815 283 11286 817 547815 2861633 633 286 633 11283 283 1 815 283 815 19 074 390

11459 4591210 210 459 210 11495 4951660 660 495 660 3 726 999 3 8883934 888 934 33726 7263999 999 726 999 3 8883 934 888 934

95 251 95 95251 251 95 251

PROGRAMME SERVICES GRANTS AND DONATIONS PROGRAMME SERVICES GRANTS AND DONATIONS PROGRAMME SERVICES GRANTS AND PROGRAMME PROGRAMME SERVICES SERVICES GRANTS GRANTS ANDDONATIONS DONATIONS AND DONATIONS INVESTMENT INCOME OTHER GAINS INVESTMENT INCOMEOTHEROTHER GAINS INVESTMENT INCOME GAINS INVESTMENT INCOME GAINSGAINS INVESTMENT INCOME OTHER OTHER

2019 VALUE DISTRIBUTION 2020 VALUE DISTRIBUTION 2020 VALUE DISTRIBUTION 2020 2020 VALUE VALUE DISTRIBUTION DISTRIBUTION

MANAGEMENT, PUBLIC LIASON AND FUNDRAISING MANAGEMENT, PUBLIC LIASON AND FUNDRAISING MANAGEMENT, PUBLIC LIASON AND MANAGEMENT, MANAGEMENT, PUBLIC PUBLIC LIASON LIASON ANDFUNDRAISING FUNDRAISING AND FUNDRAISING DONOR RECRUITMENT DONOR RECRUITMENT DONOR RECRUITMENT DONOR DONOR RECRUITMENT RECRUITMENT PATIENT ASSISTANCE PROGRAMME PATIENT ASSISTANCE PROGRAMME PATIENT ASSISTANCE PROGRAMME PATIENT PATIENT ASSISTANCE ASSISTANCE PROGRAMME PROGRAMME REGISTRY DEVELOPMENT REGISTRY DEVELOPMENT REGISTRY DEVELOPMENT REGISTRY REGISTRY DEVELOPMENT DEVELOPMENT STAFF RECRUITMENT STAFF RECRUITMENT STAFF STAFFRECRUITMENT STAFF RECRUITMENT RECRUITMENT

(2 794 230)

(2230) 794 230)1 8951698 895 698 (2(2794 794 (2 794 230)230) 1 895 1 895 698 698

1 895 698

ASSETS AND LIABILITIES ASSETS AND LIABILITIES ASSETS ASSETS ANDAND LIABILITIES LIABILITIES 2020 • 2019 2020 ••2019 2020 2020 2019 • 2019

LONG-TERM INVESTMENTS PROPERTY, PLANT AND CASHCASH ANDEQUIVALENTS CASH EQUIVALENTS OTHER OTHER CURRENT ASSETS CASH CURRENT ASSETS CASHAND CASH AND CASH AND CASH EQUIVALENTS EQUIVALENTS OTHER OTHER CURRENT CURRENT ASSETS ASSETS EQUIPMENT

2019 FUNDING SOURCES 2020 FUNDING SOURCES 2020 FUNDING SOURCES 2020 2020 FUNDING FUNDING SOURCES SOURCES

44 867 44 44867 867 44 867

CURRENT LIABILITIES LONG-TERM INVESTMENTS LONG-TERM INVESTMENTS LONG-TERM LONG-TERM INVESTMENTS INVESTMENTS

PROPERTY PROPERTY, PLAN PROPERTY, PROPERTY PLA EQU EQUIPMEN EQUIPMEN EQU

2019 FUNDING SOURCES 2019 FUNDING SOURCES 2019 2019 FUNDING FUNDING SOURCES SOURCES

PROGRAMME SERVICES GRANTS AND DONATIONS PROGRAMME SERVICES GRANTS AND PROGRAMME PROGRAMME SERVICES SERVICES GRANTS GRANTS ANDDONATIONS DONATIONS AND DONATIONS INVESTMENT INCOMEOTHEROTHER GAINS INVESTMENT INCOME GAINS INVESTMENT INCOME GAINSGAINS INVESTMENT INCOME OTHER OTHER

2019 VALUE DISTRIBUTION 2019 VALUE DISTRIBUTION 2019 2019 VALUE VALUE DISTRIBUTION DISTRIBUTION

MANAGEMENT, PUBLIC LIASON AND FUNDRAISING MANAGEMENT, PUBLIC LIASON AND MANAGEMENT, MANAGEMENT, PUBLIC PUBLIC LIASON LIASON ANDFUNDRAISING FUNDRAISING AND FUNDRAISING DONOR RECRUITMENT DONOR RECRUITMENT DONOR DONOR RECRUITMENT RECRUITMENT PATIENT ASSISTANCE PROGRAMME PATIENT ASSISTANCE PROGRAMME PATIENT PATIENT ASSISTANCE ASSISTANCE PROGRAMME PROGRAMME REGISTRY DEVELOPMENT REGISTRY DEVELOPMENT REGISTRY REGISTRY DEVELOPMENT DEVELOPMENT STAFF RECRUITMENT STAFF STAFFRECRUITMENT STAFF RECRUITMENT RECRUITMENT

2 0 1 9/ 2 0

EASING BURDENS

N

The SABMR’s Patient Assistance Programme gives the gift of life.

o one should have to worry that they won’t be able to afford a life-saving treatment for themselves or a loved one, but the donor search and verification process can get expensive. That’s why, in November 2018, the SABMR launched its Patient Assistance Programme. This programme is designed to help South African citizens, or permanent residents, who need a bone marrow transplant but do not have the money to pay the associated donor related costs. Depending on the patient’s need, the SABMR can either partially or fully cover the costs of the search for, testing, verification, and procurement of a donor at no cost to the patient.

Since the programme began, the SABMR has facilitated the donor search and stem cell procurement for eleven South African patients completely free of charge. Most of these transplants have been children whose families have not been able to provide the donor related funds.

The Patient Assistance Programme is

DONORS FOUND THROUGH PATIENT ASSISTANCE PROGRAMME AS OF 31 MARCH 2020

usually for patients without medical aid who are from areas where sufficient community fundraising is unlikely. But it is also for patients who do have medical aid, but that aid does not cover donor search, testing, or procurement even after an appeal. To qualify, patients must be classified as either H0, H1, or H2 according to their household income as per governmental regulation. The programme does not cover the cost of the actual transplant.

To apply for the programme, the patient’s treating physician sends a request for assistance, stating the need for the transplant and the patient’s financial status, to the SABMR Medical and Ethics Review Panel, a subcommittee of local transplant physicians. The panel reviews the application, taking into account the clinical feasibility of the transplant and the funds available to sponsor that patient. So far, the SABMR has had sufficient funds to cover all approved applicants.

Once confirmed, the donor search is formally activated, the patient is fully

tissue-typed, and the donor search is repeated. This creates a new shortlist of potential donors based on the patient’s full genetic typing, who are then fully typed. Once a donor is verified, donor procurement begins. The Patient Assistance Programme assists with costs of both donor search and procurement.

This programme is supported by the National Lotteries Commission (NLC), which has committed to providing the SABMR with sufficient funds to facilitate transplantation of six local patients per year for three years.

In addition, our Sustainability team organises an annual holiday gift-giving campaign on BackABuddy.co.za called Give a Little, Save a Life. The campaign is an opportunity to donate to the Patient Assistance Programme either in one’s own name or in a loved one’s name as a holiday gift. When someone donates, they are entered into a prize pool including vacations, fine dining, and merchandise.

This year, the Give a Little, Save a Life campaign raised over R120 000.

COUNTRY OF DONOR

GERMANY

2

AMERICA 2

BRAZIL

1

SOUTH AFRICA

4

UK 1

11

NEW PROCEDURES for a NEW REALITY How the SABMR kept saving lives during COVID-19.

W

e are pleased that governments around the world have been proactive in attempts to minimise the impact of COVID-19. It is likely that social distancing measures, business shutdowns, and travel restrictions for high-risk regions helped curtail the dissemination of the virus. Many countries called on residents to shelter in place, work remotely, and limit contact with the sick, immunocompromised, and elderly. As conscious global citizens, it is important that in moments like these we all do our part to be mindful of those around us and act in accordance with medical recommendations.

Unfortunately, patients in need of bone marrow transplants cannot afford to wait, which means that registries around the world could not afford to stop operating during the COVID-19 lockdown. In response to border restrictions and shutdown procedures, the SABMR was required to use innovative thinking to ensure that our patients could still receive the life-saving transplants they needed.

Because our work deals extensively with sick and immunodeficient patients and many times requires international travel for our stem cell couriers, it was

12

particularly important that we were alert, adaptive, and abiding by important COVID-19 restrictions.

SABMR’S RESPONSE TO COVID-19 The SABMR and other registries around the world rapidly modified procedures to align with COVID-19 regulations. At the time of writing, there is no evidence that COVID-19 can be transmitted via blood products or that stem cells are carriers of the virus, which means that neither the courier nor the patient receiving their stem cells should be at any increased risk.

However, as a precaution, the SABMR introduced new donation procedures in March 2020. Where possible, stem cell collection would be delayed for four weeks if a donor had been to a high-risk area or in contact with someone who had been exposed to or diagnosed with the virus.

Many of our donors for South African patients come from overseas, some of which are from countries deemed highrisk during the COVID-19 crisis. This meant the Registry had to be extremely careful in planning the transfer of stem cells. With extensive flight cancellations worldwide as lockdown procedures went into place, the SABMR strategised with

the government and local and international transplant centres to get stem cells across borders without putting South African citizens at risk of COVID-19. To prevent exposure, couriers flying into South Africa from overseas countries remained in the airport rather than delivering the product to the transplant centre as was previously the norm.

When the courier landed in South Africa, they were assessed for symptoms of the virus, then an SABMR staff member met them at the airport to retrieve the stem cells. After the transfer was complete, the courier immediately returned to their country on the next flight without exiting the airport. Registries around the world, including Israel, Italy, Spain, and Australia, instituted similar measures.

With this new procedure in place, the SABMR was granted clearance from the government to fly stem cells in and out of the country via courier. This was approved on 24 March 2020 by the South African Department of Health, the Department of Home Affairs, and the National Coronavirus Command Council.

During lockdown in South Africa in April 2020, the SABMR facilitated the stem cell collection for three South African patients, two of which had an

international donor, as well as the collection from a South African donor for an international patient and a Tanzanian donor for his brother in the United States.

Normally, stem cells are couriered fresh from the donation centre to the transplant centre and transplanted to the patient in less than two days. This is done to ensure that the highest number of healthy cells are used in the transplant.

But with widespread travel restrictions and flight cancellations as a result of COVID-19, the SABMR, in line with recommendations from the World Marrow Donor Association, recommended the use of another option: cryopreservation, or freezing, of the stem cells after they have arrived at the transplant centre. In cryopreservation, stem cells are temporarily frozen on procurement and then unfrozen at the transplant centre about a week later. Because the patient’s pre-transplant conditioning involves vigorous chemotherapy, it is very dangerous to the patient’s health to undergo conditioning without an immediate transplant.

If, for example, a patient had begun conditioning and a courier’s flight was cancelled and the transplant delayed or cancelled, the patient would be at extreme risk.

Cryopreserving the stem cells meant that

the transplant centre could have the stem cells on hand before beginning the conditioning, rather than relying on all travel going as planned.

The SABMR initiated cryofreezing both for South African donors giving stem cells to patients overseas and for stem cells being brought into the country for South African patients. In April, with limited to no passenger flights entering South Africa, the SABMR transitioned to couriering the stem cells on cargo flights.

This required further government approvals from the Department of Trade & Industry and the International Trade Administration Commission with support from the Department of Health. The SABMR commends the officials from these departments for their prompt assistance to our Donor Services Director Jane Ward in securing the necessary approvals.

During the lockdown, many of the SABMR staff had to transition from their office workspace to remote work. To assist in this transition, they were provided with the necessary hardware and software to connect to their office bound

“PATIENTS IN NEED OF BONE

MARROW CANNOT WAIT”

workstations from home, and a “Digital Office” was constructed with Microsoft 365 applications such as SharePoint and Teams.

Additional digital security measures were put in place for staff already accustomed to working remotely.

The SABMR also postponed the first two of three 2020 Golf Days so that we would not put attendees at risk, as well as our October Benefit Concert.

HELPING WHERE WE CAN Sick and immunocompromised people are even more vulnerable to viruses like COVID-19, which makes our work that much more critical. Moments like the COVID-19 crisis allow us to reflect on how important physical health is to our quality of life, and how quickly one’s medical situation can change. It reminds us to show compassion for each other, especially those of us who are sick.

At the time of writing, there is no widespread cure for the COVID-19 virus, but we do have a way to treat patients with blood diseases like leukaemia and marrow failure: a bone marrow transplant.

The SABMR hopes that we can use the COVID-19 crisis as a call to action for new bone marrow donors to register online, so that we can continue to help those we can.

13

S

DONORS FOR

UTH AFRICAN Patients

AMERICAS

USA 56 CANADA 4 BRAZIL 3

SABMR

Fact Sheet DONORS – Summary for 2019 DONORS – Summary for 2019

DONORS – Recruitment/Attrition DONORS – Recruitment/Attrition

New Donors added in 2019: 3 167 ↑247% New Donors added in 2019: 152 3 167 4.8% ↑247% Asian/Indian Number of Registered Donors: 73 409 ↑0.4% Asian/Indian 4.8% ↑3.8% Black 403 152 12.7% NumberHLA-ABCDR+ of Registered Donors: 6 373 73 409 8.7% ↑5.1% ↑0.4% Black 403 12.7% Coloured 227 7.2% ↑3.8% ↑ 4.1% HLA-ABCDR+ 6 373 8.7% HLA-ABDR 26 471 36.1% ↓1.5% ↑5.1% Coloured 227 7.2% White 2 276 71.9% ↑4.1% HLA-ABDR 26 47155.3% 36.1% HLA-AB 40 565 ↓1.5% ↓3.5% White 2 276 71.9% Other/Unknown 109 3.4% ↑ 0.1% HLA-AB 40 565 55.3% ↓3.5% Gender Other/Unknown 109 100%3.4% Total: ↑0.1% Female 45 099 61.4% Gender ↑0.4% Total: 100% Female 45 09938.6% 61.4% Male 28 310 ↑0.4% ↓0.4% Donors deleted in 2019: 2 157 ↑113% Male 28 310 38.6% ↓0.4% Ethnicity Donors deleted in 2019: 2 157 77.0% ↑113% Age limit reached 1 660 ↑0.9% EthnicityAsian/Indian 7 263 9.9% ↓0.1% Age limit reached 1 660 3.3% 77.0% ↑1.0% Medical reason 71 ↑0.9% Asian/Indian 7 263 9.7%9.9% Black 7 085 ↓0.1% ↑0.4% Medical reason Death 7 71 0.3%3.3% ↑0.1↑1.0% Black 7 085 7.9%9.7% Coloured 5 780 ↑0.4% ↑0.1% Death 0.3% ↑3.3% Unable to trace 266 7 12.3% ↑0.1 Coloured 5 78067.0%7.9% ↑0.1% White 49 154 Unable to trace 12.3% ↑1.2% ↑3.3% Emigrated 70 266 3.2% Other/Unknown 4 207 White 49 154 5.7% 67.0% ↑0.2% Emigrated Personal request 44 70 2.1%3.2% ↑0.5% ↑1.2% Other/Unknown 4 207 100%5.7% ↑0.2% Total: Following HSC donation 13 44 0.6%2.1% ↑0.3% Personal request ↑0.5% Total: 100% Following ↑0.3% Other reasonsHSC donation 26 13 1.2%0.6% ↑0.6% Other reasons 26 100%1.2% Total: ↑0.6% Total: 100%

14

Level of typing of registered SABMR donors

2 0 1 9/ 2 0

LOCAL DONORS FOR INTERNATIONAL PATIENTS

EUROPE

GERMANY 232 UNITED KINGDOM 39 FRANCE 14

POLAND 10 ITALY 6 BELGIUM 4 NETHERLANDS 3

SWITZERLAND 3 AS OF 31 DECEMBER 2019* NORWAY 2 CYPRUS 2 AUSTRALIA 2 AUSTRIA 1 AUSTRIA 1 DENMARK 1 – Recruitment/Attrition DONORS FRANCE 1 SPAIN 1 New Donors added in 2019: 3 167 ↑247% PORTUGAL 1 Asian/Indian 152 4.8% ↑0.4% DONORS – Recruitment/Attrition GERMANY 4

DONORS – Summary for 2019 Number of Registered Donors: HLA-ABCDR+ DONORS – Summary HLA-ABDR Number of HLA-AB Registered Donors: HLA-ABCDR+ Gender Female HLA-ABDR Male HLA-AB Ethnicity Gender Asian/Indian Female Black Male Ethnicity Coloured White Asian/Indian Other/Unknown Black Total: Coloured White DONORS –– Summary DONORSOther/Unknown Summary for for Total:

SOUTH AFRICA 136

73 409

6 373 for 2019 26 471 40 73 565 409 6 373 45 26 099 471 28 40 310 565

7 263 45 099 7 085 28 310 5 780 497 154 263 47 207 085 5 780 49 154 2019 4 207 2019

AUSTRALIA 5

8.7% 36.1% 55.3% 8.7% 61.4% 36.1% 38.6% 55.3%

↑5.1% ↓1.5% ↓3.5% ↑5.1% ↑↓0.4% 1.5% ↓↓0.4% 3.5%

9.9% 61.4% 9.7% 38.6% 7.9% 67.0% 9.9% 5.7% 9.7% 100% 7.9% 67.0% 5.7% 100%

↓↑0.1% 0.4% ↑↓0.4% 0.4% ↑0.1% ↓0.1% ↑↑0.2% 0.4% ↑0.1%

Black NewColoured Donors added in 2019: White Asian/Indian Other/Unknown Black Total: Coloured

403 12.7% 227 7.2% 3 167 INDIA 1 2 276 71.9% 152 4.8% 109 3.4% 403 12.7% ITALY 3 100% 227 7.2%

White 2 276 71.9% 1 NETHERLANDS Donors deleted in 2019: 2 157 Other/Unknown 109 3.4% Age 1 660 77.0% Total:limit reached 100% PORTUGAL 1 71 3.3% ASIAMedical reason Death 7 0.3% Donors deleted in 2019: 2 157 SPAIN 1 Unable to trace 266 12.3% Age limit reached 1 660 77.0% Emigrated 70 3.2% Medical reason 71 3.3% SWEDEN 1 Personal request 44 2.1% Death 7 0.3% Following donation 13 0.6% Unable toHSC trace 266 12.3% DONORS – Recruitment/Attrition UK 4 DONORS – Recruitment/Attrition Other reasons 26 1.2% Emigrated 70 3.2% Total: 100% Personal request 44 2.1%

ISRAEL 7 TAIWAN 3 SINGAPORE 1 ↑0.2% RUSSIA 1Donors New added in New Donors added in 2019: 2019: Following HSC donation Asian/Indian INDIA Asian/Indian 1Other reasons

Number 73 Number of of Registered Registered Donors: Donors: 73 409 409 HLA-ABCDR+ 6 8.7% HLA-ABCDR+ 6 373 373 8.7% ↑ ↑5.1% 5.1% HLA-ABDR 26 471 36.1% HLA-ABDR – South African 26 471 Patients 36.1% ↓ ↓1.5% 1.5% SERVICES HLA-AB 40 55.3% HLA-AB 40 565 565 55.3% ↓ ↓3.5% 3.5% Gender New Preliminary Searches in 2019: 243 Gender Female 45 61.4% Asian/Indian 8 SERVICES – South African Female 45 099 099 Patients 61.4% ↑ ↑0.4% 0.4% Male 28 310 38.6% Black 75 ↓ 0.4% Male 28 310 38.6% ↓0.4% Coloured 22 Ethnicity New Preliminary Searches in 2019: 243 Ethnicity White 134 Asian/Indian 9.9% Asian/Indian 7 8 Asian/Indian 7 263 263 9.9% ↓ ↓0.1% 0.1% Other/Unknown 4 Black 75 Black 7 085 9.7% ↑ 0.4% Black 7 085 9.7% ↑0.4% Coloured 22 Coloured 5 780 7.9% 0.1% Coloured 5 780 7.9% ↑ ↑134 0.1% New ActivatedWhite Searches in 2019: 134 White 49 67.0% White Asian/Indian 49 154 154 67.0% 44 Other/Unknown Other/Unknown 4 207 5.7% Other/Unknown 4 207 5.7% ↑ Black 33 ↑0.2% 0.2% Total: 100% Coloured 15 100% 134 New Total: Activated Searches in 2019: White 814 Asian/Indian Other/Unknown 1 Black 33 Coloured 15 Patients Transplanted 34 White in 2019: 81 SABMR donor 101 Other/Unknown International donor 24 SERVICES – South African Patients Patients Transplanted in 2019: 34 SERVICES – South African Patients SABMR donor 10 International donor New Preliminary Searches in 2019: 243 24

New Preliminary Searches in 2019: 243 Asian/Indian 8 Asian/Indian 8 Black 75 Black 75 Coloured 22 Coloured – International Patients 22 SERVICES White 134 White 134 Other/Unknown 4 Other/Unknown 4 139 Activated Searches Transplanted with–SABMR donor Patients 2 SERVICES International New Searches in 134 Family Donor Assistance 2 New Activated Activated Searches in 2019: 2019: 134 Asian/Indian 4 Activated Searches Asian/Indian 4 139 Black 33 Transplanted 2 Black with SABMR donor 33 15 FamilyColoured Donor Assistance 2 Coloured 15

↑3.8% ↑↑247% 4.1% ↑0.4% ↑↑0.1% 3.8% ↑4.1% ↑113% ↑0.1% ↑0.9% ↑1.0% ↑↑113% 0.1 ↑3.3% ↑0.9% ↑↑1.2% 1.0% ↑↑0.5% 0.1 ↑↑3.3% 0.3% ↑↑0.6% 1.2%

↑0.5%

3 ↑247% USA 7 3 167 167 ↑247% 13 0.6% ↑0.3% 152 4.8% ↑ 26 1.2% 152 4.8% ↑0.6% ↑0.4% 0.4% Black 403 12.7% ↑ Total: Black 403 100% 12.7% ↑3.8% 3.8% Coloured 227 7.2% ↑ Coloured 227 7.2% ↑ 4.1% Level of typing of registered SABMR donors4.1%

White 2 71.9% White 2 276 276 71.9% Other/Unknown 109 3.4% # of % HLA-ABDR ↑ Other/Unknown 109 3.4% ↑0.1% 0.1% Ethnicity Donors typed Total: 100% Total: 100% Level of typing of registered SABMR donors Asian/Indian 4 095 56.4% ↑1.7% # of % HLA-ABDR Donors deleted in 2019: 2 157 ↑113% Donors deleted 2 157 90.4% ↑113% Black ↑0.5% Ethnicityin 2019: 6 405 Donors 1 660 typed Age limit reached 77.0% ↑ Age limit reached 3 997 1 660 69.2% 77.0% ↑0.9% 0.9% Coloured ↑2.0% *The3.3% numbers↑1.7% listed Asian/Indian 4 095 56.4% Medical reason 71 ↑ 1.0% Medical reason 71 35.1% 3.3% ↑ 1.0% White 17 251 ↑4.2% are in0.3% accordance Death 7 ↑ 0.1 Death 7 0.3% ↑ 0.1 Black 6 405 90.4% ↑0.5% Other/Unknown 1 096 26.1% ↑2.6% with12.3% WMDA statistics Unable to trace 266 ↑3.3% Unable to trace 266 12.3% ↑3.3% Coloured 3 997 69.2% ↑2.0% Total: 32 844 44.7% ↑3.5% reporting annual Emigrated 70 3.2% ↑ Emigrated 70 35.1% 3.2% ↑1.2% 1.2% White 17 251 ↑4.2% guidelines.

Personal request 44 2.1% ↑ Personal request 44 26.1% 2.1% ↑2.6% ↑0.5% 0.5% Other/Unknown 1 096 Following 13 0.6% ↑ Following HSC HSC donation donation 13 44.7% 0.6% ↑3.5% ↑0.3% 0.3% Total: 32 844 Other 26 1.2% ↑ Other reasons reasons 26 1.2% ↑0.6% 0.6% Total: 100% Total: 100%

SABMR Donors requested on behalf of patients

Donors requested RequestedSABMR for DR/Extended typing: 646 Level of typing of registered SABMR donors on of behalf of patients Level of typing registered SABMR donors

Requested for verification typing: # % South # of ofpatients % HLA-ABDR HLA-ABDR Requested for African DR/Extended typing: Ethnicity Ethnicity Donors typed International patients Donors typed Asian/Indian 4 095 Requested for verification Asian/Indian 4 095 typing:56.4% 56.4% HSC donations in 2019:patients South African Black 6 Black 6 405 405 90.4% South African patients 90.4% International patients Coloured 3 997 patients 69.2% Coloured International 3 997 69.2% White 17 251 35.1% HSC donations in 17 2019: White 251 35.1% Other/Unknown 1 096 South African Other/Unknown 1 096patients 26.1% 26.1% International patients 44.7% Total: 32 844 Total: 32 844 44.7%

109 28 646 81 ↑1.7% 109 ↑1.7% 13 28 ↑0.5% ↑0.5% 9 81 ↑2.0% 4 ↑2.0% ↑4.2% 13 ↑4.2% ↑2.6% 9 ↑2.6% 4 ↑3.5% ↑3.5%

15

2 0 1 9/ 2 0

INTERNATIONAL FAMILY Assistance Programme Tanzanian donor comes to South Africa to donate for brother in the United States.

F

or about 30 percent of patients in need of a bone marrow transplant, their donor is a blood relative. But sometimes, the patient lives overseas from his or her donor. When someone has immigrated to North America or Europe and then gets sick, it can be a very long, expensive, and often unsuccessful process for their relative to obtain a medical visa to travel for the transplant – and most patients cannot afford to wait. That’s why the SABMR has the International Family Assistance Programme: to help ease the logistical and financial challenges associated with international family transplants. The SABMR believes everyone deserves a chance at life, no matter where they live.

Under this programme, although neither donor nor patient is from South Africa, the SABMR steps in to coordinate and help pay for a donor’s travel from an African country to South Africa to collect their stem cells. The SABMR then couriers those stem cells to the patient overseas, all at no charge to the donor or the patient.

The SABMR handles all financial logistics behind the scenes in coordination with the patient’s registry and organisations like the National Marrow Donor Program. So far, the SABMR has assisted with everything from blood sample testing to stem cell collection for over twenty patients under the International Family Assistance Programme, including the facilitation of eight transplants.

In March 2020, a 38-year-old Tanzanian donor was flown from Tanzania to South Africa by the SABMR to donate stem cells for his brother in the United States.

Donor Fadhili Mussa Mahendo is the first of seven children in his family, and his brother immigrated with his family to New Jersey in 2008.

16

The SABMR contacted Fadhili in January to tell him that he was a possible match for his brother.. One week later it was confirmed that he was a haplo match, or a half match, which is sufficient to undergo a transplant.

The SABMR then planned Fadhili’s travel to the transplant centre in South Africa, paid for and booked his flights to and from Tanzania, and paid for his accommodation and food while in South Africa. The SABMR also coordinated and paid for the courier service to get the stem cells to Fadhili’s brother in the United States. Fadhili did not have to pay for or plan anything.

On Monday, 31 March, Fadhili underwent the donation procedure in Cape Town’s Netcare Kuilsriver Hospital. The process took almost five hours. “To be honest, I expected pain,” Fadhili explained, “but when I was in the procedure, I didn’t feel any pain. But my friends and coworkers, and even my family members, thought the process was a surgery, so they were worried. But I taught them that it’s not surgery, it’s a safer process and you don’t feel any pain.”

Once the stem cells were collected, they were cryopreserved and sent to the United States for Fadhili’s brother’s transplant.

As a result of COVID-19 shutdown restrictions, Fadhili’s brother’s transplant was delayed and he received the transplant at the end of April.

For Fadhili, the ability to donate for his brother was an incredible gift. “I’m so happy to be a donor because I saved the life of my brother, and the process of donating is very simple to do.” They are pictured above with Fadhili’s children.

TRANSPLANTS FACILITATED UNDER FAMILY ASSISTANCE PROGRAMME AS OF 31 MARCH 2020 COUNTRY OF PATIENT

NETHERLANDS

1

SWEDEN 1 USA 7

COUNTRY OF DONOR

ETHIOPIA 1 GHANA 1 KENYA 1 NIGERIA 1 SOMALIA 1 SOUTH AFRICA

3

TANZANIA

1

STORIES

A MEETING TO REMEMBER Transplant recipient meets the donor who saved her life.

F

ive years after receiving her lifesaving bone marrow transplant, Elmarie Lahoud was fortunate enough to meet her stem cell donor, Petronella Ballantyne.

Petronella, a broker from Polokwane, Limpopo, had been a regular blood donor prior to joining the SABMR. In 2013, after hearing about the lack of South African stem cell donors during one of the Registry’s awareness campaigns, Petronella decided to register to be a donor. Less than a year later, she would get the call: she was a match for a patient in need, which meant she had the opportunity to save someone’s life.

When asked what it meant to her to be a donor, Petronella explained, “It’s difficult to find words to describe it. Emotional.

Scary. Fantastic. Overwhelming. It meant the world to me. The knowledge that you may save someone’s life is overwhelming and humbling.”

The same year Petronella joined the Registry, Elmarie, a mother and former principal at a school for the disabled in Roodepoort, Gauteng, was diagnosed with non-Hodgkin lymphoma (NHL).

The severity of her condition meant that a

bone marrow transplant would be the last resort and needed to happen as soon as possible. All members of her family were tested but no related match was found, so the SABMR quickly kicked off an international unrelated donor search.

The worldwide search discovered Petronella right here in South Africa, who after further testing was confirmed to be a 100 percent match for Elmarie. The transplant was conducted in June 2014.

In June 2019 in Bloubergstrand, Elmarie and Petronella were finally able to meet.

It was an emotional gathering for them both, and they were grateful for the opportunity to share stories about the transplant and get to know each other.

“SHE REPLENISHED MY LIFE

Of the moment she met Petronella, Elmarie explained, “It was an indescribable moment to meet the selfless and caring person who granted me another chance at a full and happy life again. She will never know the extent to which she replenished my life and gave me a new perspective on living. I have a sister from another mother.” Petronella and Elmarie remain close friends and speak often.

AND GAVE ME A NEW PERSPECTIVE ON LIVING”

Before a match was found, Elmarie’s greatest fear was that she wouldn’t be able to watch her daughter grow up. Thankfully, the transplant successfully cured Elmarie of her lymphoma and she is now cancer free, spending lots of time gardening, reading, and walking with friends. She continued her training in open water swimming after her transplant and is actively involved in a number of social welfare projects in Caledon, where she now lives.

“I had never dreamt of meeting my donor,” Elmarie said. “I just didn’t think it was possible. The phone call inviting me to the meeting was overwhelming. My gratitude to Petronella had no measure.”

SABMR Director Dr. Charlotte Ingram and SABMR Donor Welfare Officer Clarice Cairncross were both in attendance. Cairncross said that the pair’s meeting brought to mind a quote from Maya Angelou: “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

17

TRANSPLANT RECIPIENTS FIND DONORS FOR OTHER PATIENTS “The purpose of life is not to be happy. It is to be useful… to have it make some difference that you have lived and lived well.” – Ralph Waldo Emerson

F

or bone marrow transplant recipients Robbie Eddles and Aaron Lipschitz and their families, the search for a donor was an emotional and desperate time. Both families kicked off massive donor drives across South Africa. From the beginning, they knew it was very unlikely they would find a match for Robbie or Aaron from a local drive. They did it anyways – in hopes that a donor would be found for someone else in need.

was born. The SABMR quickly jumped on board, working with the family to coordinate donor drives around the country, starting with registration for matrics at Robbie’s school.

ROBBIE EDDLES AGE 18 THREE-TIME LEUKAEMIA SURVIVOR When Robbie Eddles was diagnosed with leukaemia for the third time in 2019 and required a bone marrow transplant, his aunt shared a Facebook post urging people to register with the SABMR. The post went viral, and #RobbiesWarriors

18

Robbie and his family knew that finding a donor from one of these drives would be extremely unlikely. For Robbie, it didn’t matter. “I knew it was a one in a million chance, but I also knew that I’m not the only person with this problem. If in the process of my search, we could find one for someone else – that would be amazing.”

Robbie’s wish soon came true: one of his friends, who registered at his first donor drive, got the call to be a donor for a patient in need. Now, another family friend is also in final donor testing.

STORIES “We wanted to get more people registered no matter what,” Robbie’s mother, Colleen, explained. “We knew that if people were willing to be a donor for Robbie, they would also want to be a donor for someone else, because they understand that person’s plight and can resonate with their pain, desperation, and confusion. You have to realise that you’re probably not going to be able to find a donor for your own child, but you’re doing it for so many others out there.”

It was all hands on deck for the SABMR during the #RobbiesWarriors drives.

Whereas the Registry normally gets a few thousand new donors a year, several thousand new donors registered in a matter of a few weeks. By February 2019, the number of applications had hit the seven thousand mark, an unprecedented surge of applications.

In the end, it was his sister Gilly (pictured between Robbie and their sister Megan) who would be his life-saving donor, through an experimental treatment in Israel that uses genetic haploid matches for transplants. The transplant, which occurred in August 2019, successfully cured Robbie of his cancer.

Although Robbie is healed, the Eddles family plans to continue with donor drives, including annual matric registration drives at Robbie’s school and others. But Colleen stressed that there’s so much more people can do besides registering. “There are so many people who want to help,” she explained, “but they’re past the 45-year-old cutoff. I tell people: you can either register to donate stem cells, or you can donate money.

If you’re too old, donate money.” Several friends of the Eddles family donated money and computers to the SABMR so that they could hire more staff and register more donors faster.

The same is true for kids under 18, the minimum age to register. Robbie told the story of one friend who was too young to register but helped in another huge way.

“He was only 17 at the time and he was bummed he couldn’t register. But he had just won an award for the Wildlife Photo of the Year. He came to me and said, ‘Please, I want to give you my prize money.’ And I responded, ‘Please don’t give me the money. If you want to help,

help the community by donating to the SABMR.’ And he did.”

Colleen says of the SABMR, “They saved Robbie’s life and he now has a bright future ahead of him thanks to them, as do so many others now worldwide!”

AARON LIPSCHITZ AGE 5 TRIUMPHS INSURMOUNTABLE ODDS While still an infant, Aaron Lipschitz was diagnosed with a metabolic absorption disorder. The disorder made him unable to tolerate any food besides a specialised hypoallergenic formula which he received through an intravenous feeding tube.

When he was three, after years of infections that baffled his doctors, Aaron was also diagnosed with an interleukin-12 receptor defect, a defect preventing his body from fighting minor infections.

The defect affects fewer than 300 people worldwide. After Aaron endured a third, almost fatal attack of septicemia, his doctors decided to undergo a bone marrow transplant.

Aaron’s mother, Taryn, said they knew a local donor probably wouldn’t be found, but decided to coordinate drives anyways.

“The SABMR told us that if there was a donor, they would probably be overseas.

But we thought, let’s take this opportunity to make people aware about the Registry.

Maybe we’ll find a donor for Aaron and maybe we won’t, but it didn’t really matter.

It was about awareness.”

In a single week, dubbed Save Aaron Week, over 500 new donors were registered, and that number grew as

drives expanded in Johannesburg and Cape Town. Aaron’s primary physician, Dr. Deon Smith, called the SABMR “extraordinary” in its pursuit of a donor for Aaron. It was the first donor drive since 1996 that the Registry organised independently from its previous donor recruitment partner.

Like Robbie, Aaron’s family received a call in June 2019 to say that one of Aaron’s registration drives helped find a donor for a patient in need. When she announced the news to followers of the family’s Save Aaron Facebook page, Aaron’s mother wrote, “He is already saving lives at the age of 4.”

Aaron received his transplant in August 2018. After an unexpected reaction called a cytokine storm, he spent a month in the intensive care unit at Red Cross Children’s Hospital. Aaron’s doctors would later discover another genetic variant, FOXP3, that possibly contributed to the reaction.

Thankfully, since his recovery, Aaron’s time at the hospital has dropped significantly and his doctors have seen a major improvement in his body’s ability to fight infections. Nowadays, Aaron is playing putt-putt, soccer, and tennis, taking swimming and golf lessons, and teaching himself to read. He still receives weekly immunoglobulins treatment and has a feeding tube, now in his stomach, but his doctors hope he will soon be able to eat enough food that it can be removed.

Through every challenge, Aaron’s medical team has been amazed by his resilience.

As Dr. Smith said, “Aaron has survival stamped all over him.”

19

CATCHING UP WITH NONHLANHLA MTSHALI

N

Johannesburg nurse and bone marrow recipient spreads awareness about her second chance at life.

onhlanhla “Noni” Mtshali is a nurse from Florida, Johannesburg. For several years, Noni received multiple blood transfusions, gastroscopies, and colonoscopies in an attempt to identify an undiagnosed blood disorder. For women, a normal haemoglobin level, which measures red blood cell count, is between 12.0 and 15.5. Noni’s average was 4.

But her doctors couldn’t figure out why.

In 2016, it was discovered that Noni had aplastic anemia, an autoimmune disease that meant her body was failing to produce a sufficient number of blood cells. It was clear that Noni needed a bone marrow transplant, so her doctor contacted the SABMR. A month later, her bone marrow donor was found in Brazil.

Noni received her transplant in 2017 and it successfully cured her condition.

“I’ve never looked back ever since,” Noni said. “The transplant has done so much for me. It restored my confidence. It has given me something to look forward to.

I got married the next year, and it was a perfect moment of rejoicing after everything that I had been through. The transplant gave me a second chance to life.” Now, Noni and her husband are trying for children.

20

For Noni, the lack of knowledge about bone marrow in South Africa is a massive problem. “There are so many people who ignore the issue or feel like it doesn’t exist to them or their family. We aren’t given enough of a platform to talk about it with the public and say, ‘This is what’s happening, and it’s really serious.’”

Noni acknowledged that this particularly affects black South Africans. There is a disproportionally low number of black donors on the Registry: approximately 8 000 out of the 73 000 total donors registered.

A donor is usually found within the same ethnic group as a patient, so more black donors are critically needed. Speaking specifically about her Zulu community, Noni explained, “The older generation is reluctant to new technology and new information coming in. They believe in traditional healing, and often they don’t believe in genetic diseases or things like that. They are comfortable with what they know.” Noni noted that things are changing, but not quickly enough. “Medicine has revolutionised.

We have a new era of medical aid, doctors, hospitals – and the older generation

takes time to adjust to that. The younger generation is open to adapting, but right now they’re just not getting enough information about bone marrow.”

There are also many misconceptions about the donation process. According to Noni, “When I had to explain the procedure to my friends and family, they said, ‘You want the fluid from inside my bone to be given to you? What if I don’t have any afterwards?’ And I responded, ‘You don’t understand! You are always generating bone marrow; your marrow gets rebuilt.’”

“ THERE’S ALWAYS A

SOLUTION. I FOUND MINE IN THE SABMR”

She often brings her experience into the conversation with patients at Lancet Laboratories, where she works as a nurse. “I talk to as many patients as I can about bone marrow. I want to tell my testimony of what I’ve been through. I want them to know a second chance is possible.”

Since her transplant, Noni said, she believes nothing is impossible.

“I am grateful for every day I get.

There is always a solution somewhere, and I found mine in the SABMR. They are the connection between people who are looking for life and people who are giving it.”

STORIES

SIXOXA NONHLANHLA MTSHALI

U

Umhlengikazi kanye nomuntu owathola umnkantsha.

Nonhlanhla “Noni” Mtshali ungumhlengikazi waseFlorida, eGoli. Iminyaka eminingi, uNoni wathola ukufakelwa igazi okuningi, ama-gastroscopy, kanye nama-colonoscopy nokwakuyimizamo yokuhlonza isifo segazi esasingakatholakali ukuthi siyini.

Kwabesifazane, amazinga afanele e-haemoglobin, akala inani lamangqamuzana (cells) egazi abomvu, aphakathi kuka-12.0 kanye no-15.5. Isilinganiso sikaNoni sasingu-4. Kodwa odokotela babengatholi ukuthi kwakungani lokhu.

Ngo-2016, kwatholakala ukuthi uNoni une-aplastic anaemia, isifo se-autoimmune esasichaza ukuthi umzimba wakhe wawuhluleka ukukhiqiza inani elanele lamangqamuzana egazi. Kwakucacile ukuthi uNoni wayedinga ukufakelwa umnkantsha, ngakho-ke udokotela wathinta i-SABMR. Ngemva kwenyanga, owayezomnikelela ngomnkantsha watholakala eBrazil. UNoni wafakelwa umnkantsha ngo-2017 nokwelapha isifo sakhe.

“Konke kwahamba kahle kusukela ngaleso sikhathi,” kusho uNoni.

“Ukufakelwa umnkantsha sekungenzele okuningi. Kubuyisele ukuzethemba kwami. Kungenze ngaba nezinto engiziphokophelayo. Ngashada ngonyaka owalandela lowo, kwakuyisikhathi esihle sokuthokoza ngemva kwakho konke okwakungehlele. Ukufakelwa umnkantsha kwanginika

ithuba lesibili lokuphila.” UNoni kanye nomyeni wakhe sebezama ukuthola izingane.

NgokukaNoni, ukungabikho kolwazi olumayelana nomnkantsha eNingizimu Afrika kuyinkinga enkulu. “Kunabantu abaningi abayishaya indiva le ndaba noma ababona sengathi ayibathinti bona noma imindeni yabo. Asinikwa izithangami ezanele zokukhuluma ngayo nomphakathi sithi, ‘Nansi into eyenzekayo, futhi ibucayi kakhulu.’”

UNoni wathi lokhu kunomthelela kakhulu kubantu Abamnyama baseNingizimu Afrika. Kunenani elincanne kakhulu labanikelayo abamnyama kunesibalo sabanikelayo abaku-Registry: balinganiselwa ku-8 000 enanini eliphelele labanikelayo abayi-73 000 ababhalisiwe. Onikelayo uvamise ukutholakala eqoqweni lohlanga elifana nelesiguli, ngakho-ke sidinga kakhulu abanikelayo abamnyama. Uma ngikhuluma ngqo ngamaZulu, kuchaza uNoni, “Abantu asebethe ukukhula abayizwa kahle indaba yobuchwepheshe obusha kanye nolwazi olusha olutholakalayo.

Bakhokhelwa ekwelashweni kwezendabuko, futhi isikhathi esiningi abakholelwa ezifweni eziphathelene nofuzo noma izinto ezifana nalezo. Bazizwa kahle ngalokho abakwaziyo.”

UNoni waphawula ukuthi izinto ziyashintsha, kodwa lokhu akwenzeki ngokushesha ngokwanele. “Ezokwelapha seziqhamuke nezinguquko. Sesisesikha-

thini esisha sezinsiza zezokwelapha, odokotela, izibhedlela – kanti-ke isizukulwane esesithe ukukhula sithatha isikhathi ukuhambisana nalokho. Isizukulwane esisesincane siyemukela ukuhambisana nesimo, kodwa okwamanje asitholi ulwazi olwanele olumayelana nomnkantsha.”

Kukhona futhi imibono ukuqonda okungelona iqiniso ngokuphathelene nenqubo yokunikela. NgokukaNoni, “Ngesikhathi ngichazela abangani kanye nomndeni wami mayelana nenqubo, bathi, ‘Ufuna ukunikezwa uketshezi olungaphakathi kwamathambo ami?

Kuzokwenzakalani uma ngingasasele nalutho ngemva kwalokho?’ Ngase ngiphendula ngokuthi, ‘Aniqondi! Nihlala nikhiqiza umnkantsha; umnkantsha wenu uphinde wakheke futhi.’”

Ujwayele ukuxoxa ngalokho okwenzeke kuye neziguli e-Lancet Laboratories, lapho asebenza khona njengomhlengikazi. “Ngikhuluma neziguli eziningi ngendlela engingakwazi ngayo mayelana nomnkantsha. Ngifuna ukufakaza ngalokho okwenzeke kimi. Ngifuna zazi ukuthi kungenzeka uthole ithuba lesibili.”

Kusukela ekufakelweni kwakhe umnkantsha, uNoni uthe, ukholelwa ekutheni akukho okungenzeki. “Ngibonga usuku ngalunye engilutholayo. Kuhlale kukhona isisombululo endaweni ethile, esami ngasithola e-SABMR. Baxhumanisa abantu abafuna impilo kanye nalabo abayinikezayo.”

21

STORIES

IT (SOMETIMES) TAKES TWO When the call came to save a life, he answered — twice.

I

n 2010, Marius Odendaal, an electrical engineer from Sasolburg who works in IT, registered with the SABMR. In 2018, after eight years on the Registry, he finally received a call telling him he may be a match for a patient in need.

“I thought maybe it wouldn’t happen, but in June 2018 someone from the SABMR in Cape Town phoned me and asked if I was still willing to donate,” Marius said.

He was delighted and immediately agreed to go in for further match testing. Blood tests at his local blood bank showed that he was a 100 percent match for the patient, a South African in dire need of a bone marrow transplant.

On donation day, Marius, his wife Wanda, and their nine-year-old daughter Kaylin set off from Sasolburg to Johannesburg for the procedure, which was conducted via peripheral blood stem cell collection at the Wits Donald Gordon Medical Centre.

The donation process went smoothly.

“Jane Ward and Clarice Cairncross from

22

the SABMR were at my bedside throughout the day,” Marius said. “It was not at all painful. There were no issues at all.” By mid-afternoon the procedure was complete, and the family set off on the three-hour drive back to Sasolburg through heavy traffic. It was only after they returned home when the SABMR team discovered that not enough stem cells had been collected, and they phoned Marius to ask if he would be willing to come back and donate again.

Marius was happy to return to Johannesburg and finish the process. “As I said to Jane,” Marius explained, “we were looking forward to Christmas, and the recipient was just hoping to be there at Christmas.

The recipient would have been looking forward to just getting well.”

Marius said he felt “one hundred percent” after his donation and that there were no ill effects from the process. Marius is an avid runner and scuba diving instructor, and after a week

of advised rest following the donation, he returned to running. He participated in a half marathon shortly afterwards.

Now, Marius is playing his part to raise awareness about bone marrow transplants in his community. Several of his friends decided to register with the SABMR after hearing his story.

“It’s the right thing to do,” Marius told the SABMR team. “I’ve been so blessed my whole life; this is something I can give back. Hopefully my recipient made it and could be there for Christmas. But if I only gave the person one more day to be with family, it was worth it. I would do it again in a heartbeat – and again, and again.”

“IF I ONLY GAVE THE PERSON

ONE MORE DAY TO BE WITH FAMILY, IT WAS WORTH IT”

“ TERRY DEDICATED ALMOST

50 YEARS OF SERVICE TO THE NATIONAL HEALTH LABORATORY SERVICE”

A FAREWELL AFTER FIVE DECADES Bidding a happy retirement to the Registry’s longtime Deputy Director, Terry Schlaphoff.

I

n 1971, Terry Schlaphoff (née Terry Kriel) joined the Provincial Blood Grouping Laboratory as a 16-year-old matriculant. While working in the Blood Banks of both Tygerberg and Groote Schuur hospitals, she qualified with a National Diploma in Medical Technology and steadily climbed the ranks of seniority in the organisation, which ultimately became part of the National Health Laboratory Service (NHLS). She worked closely with countless staff members in the laboratory, many of whom remain friends.

Terry soon obtained her Master’s Diploma in Medical Technology (cum laude) and worked in a variety of labs, including the Enzymes, DNA, and Forensic Labs. During this time, she travelled both locally and internationally to be trained in new testing techniques to integrate into the organisation. Terry has authored and co-authored numerous scientific papers and served for many years as Moderator

in the Blood Transfusion Category for the Medical Technology final examination.

In 1996, five years after the SABMR was established, the Provincial Laboratory for Tissue Immunology underwent a realignment process. Terry was asked to join the nascent SABMR team and, in time, was seconded to the SABMR. She became Deputy Director of the organisation and has retained this position until her retirement. The extraordinary friendship that ensued between Terry and the SABMR’s first director, Professor Ernette du Toit, helped nurture the Registry from a sapling into a strong tree. Terry attended World Marrow Donor Association (WMDA) meetings on the Registry’s behalf and returned to the office to share the knowledge she had gathered and feed the Registry’s root system.

In true “Terry style,” she devoted herself to the development of the SABMR. Together with long-time colleague, Veronica Borrill, Terry undertook the Registry’s

path to full accreditation status, an achievement finally reached in 2018 after years of hard work and effort. Terry and Veronica also coordinated the Registry’s hosting of the 6th International Donor Registries Conference and the WMDA Working Group Meetings in 2006.

The Registry is privileged to have enjoyed Terry’s committed leadership and friendship for its first three decades. In total, Terry dedicated almost 50 years of service to the National Health Laboratory Service, something few people can say of their careers.

We wish her well as she enjoys sharing time with her husband Paul, her children, and grandchildren, and returns to her hobbies of reading, knitting, and scrapbooking. The branches of the registry’s tree will continue to blossom and grow in gratitude to Terry as she passes on its care to the current SABMR team.

Terry retires in the knowledge of a job well done.

23

THE SABMR CELEBRATES

World Marrow Donor Day 2019 Thank you, donors.

W

orld Marrow Donor Day is about compassion, celebration, and community.

HIGH TEA AT WINCHESTER MANSIONS

On Saturday, 21 September, the SABMR celebrated World Marrow Donor Day with a Donor Appreciation High Tea. World Marrow Donor Day is an annual celebration held on the third Saturday of September, when donors around the world are celebrated for their decision to donate healthy bone marrow stem cells to patients in need. In 2018, the SABMR team won the World Marrow Donor Association’s Grand Prize for our World Marrow Donor Day donor celebrations – and we wanted to do even more this year to applaud our donors’ generosity and show our appreciation.

The High Tea was held at Cape Town’s Winchester Mansions and featured live music, a sumptuous buffet selection of

24

high tea savouries and sweets, and a photo booth. From farmers in their early seventies to young graphic designers, bone marrow donors from all over the Western and Eastern Cape came to share stories and catch up with the SABMR staff.

“It’s really a family. They still remember us,” one donor commented on his relationship with the Registry. Though he donated over ten years ago, he was shocked at how well the SABMR kept up with its donors and continued to show its appreciation year after year. The SABMR’s third-ever donor was also present at the event, having donated almost two decades prior.

“They treat us like kings, they really do,” another donor noted. “They really take care of you.” Donors of all ages chatted about what it meant to them to be a donor, and even joked about the benefits,

like the free ten years of medical checkups following the donation. “It’s a nice perk,” said a donor.

23-year-old donor Sibongile Jimlongo expressed her gratitude to the SABMR team for being so attentive throughout her donation process, which occurred last year. “On the day of, a member of the staff comes to talk you through the process.

They stay with you the whole time.

Even now, they call just to check up on me.”

SABMR Medical Director Dr. Charlotte Ingram addressed the guests, sharing a bit about the SABMR’s history and some recent landmarks, including the facilitation of the Registry’s 500th transplant. Before cake was served, Dr. Ingram thanked donors for their potentially life-saving decision to register with the SABMR. When guests were asked if they would donate again, it was a resounding, “Absolutely!”

MORE CELEBRATIONS: DONOR GIFT BOXES, AND A GROOTE SCHUUR LIGHT SHOW The SABMR wanted to ensure that every donor felt the love on this year’s World Marrow Donor Day, and that included those who couldn’t attend the high tea. So, as a team, the SABMR staff put together gift boxes to ship to our donors all across South Africa. The gift boxes included a picnic set, with a signature turquoise blanket, a picnic mug and – just in case – some bug spray.

The Registry also coordinated the decoration of Groote Schuur Hospital’s façade with our signature turquoise blue string lights for the two weeks surrounding World Marrow Donor Day 2019.

Groote Schuur Hospital is the home of our head office in Cape Town. The lights served as a reminder for all patients, staff, and visitors of Groote Schuur of the SABMR’s mission: to help those in need of bone marrow transplants find their donor and get the hopefully life-saving treatment they need.

Veronica Borrill, former Harvest Coordinator for the SABMR, spoke for the whole team when she said that World Marrow Donor Day is extremely emotional for the Registry staff. “Every donor is a miracle. I truly believe that,” she explained, moving between tables to greet every guest at the high tea.

“Without them, the Registry is nothing.”

25

Global MEETINGS Networking for a better tomorrow.

M

embers of the SABMR staff attended and presented at a number of international transplantation and blood transfusion conferences in 2019.

Below, we share some highlights from three of them.

THE ONE FORUM The One Forum, formerly known as the National Marrow Donor Program Council Meeting, was held from 7-9 November 2019 in Minneapolis, Minnesota.

SOUTH AFRICAN NATIONAL BLOOD TRANSFUSION CONGRESS The 35th South African National Blood Transfusion Congress was held in Sun City from 5-8 August 2019. The aim of the congress was to showcase achievements, discuss problems, and broaden the knowledge base of blood transfusion work in South Africa.

The SABMR exhibited at the congress for the first time. Both SABMR Director Dr. Charlotte Ingram and Harvest Coordinator Jane Ward gave presentations. Dr. Ingram presented on “Success and Challenges: delivering on a diverse stem cell registry and patient service in South Africa and Africa.” Jane Ward presented on “GRID, the global registration identifier for stem cell donors: is it different from ISBT 128 Donation Identification Number?” The SABMR table was overseen by Donor Recruitment Support Officer Siphokazi Dyasi.

26

SATS & SATIBA CONGRESS From 6-8 September 2019, the South African Transplantation Society (SATS) and the South African Tissue Bank Association (SATiBA) hosted their first joint venture congress at the Krystal Beach Hotel in Gordon’s Bay, Cape Town.

Notable presentations from both local and international speakers covered a variety of transplantation topics, with particular focus on ethics in transplantation, kidney paired exchange initiatives, new developments in thoracic and liver transplantation, tissue engineering, cell therapy, and bio-repositories.

Dr. Ingram presented on “Overcoming Challenges to Stem Cell Transplants.”

Siphokazi Dyasi and SABMR Donor Recruitment Officer Nadia Chalkley managed a table at the congress.

Representatives from registries around the world gathered to discuss new innovations and share inspiring stories.

SABMR’s Jane Ward and Search Assistant Lisa Terblanche attended the conference and were able to meet the National Marrow Donor Program’s (NMDP) Case Manager, Jan Raaf. Jan is the SABMR’s case manager and facilitates with NMDP donors for South African patients.

Keynote speakers included Patrick Lencioni (Founder and President of the Table Group), Dave Ridley, and Earvin “Magic” Johnson.

Guests were treated to a tour of the US Bank Stadium, where the 2018 Super Bowl was played. The last day featured sessions on new cell and gene therapies, patient and donor experiences with sickle cell, a comparative discussion on CAR-T vs. HCT (Chimeric Antigen Receptor Therapy vs.

Haematopoietic Cell Transplantation), and Donor Clonal Haematopoiesis.

Special thanks

TO ALL

UR PARTNERS

including our anonymous supporters.

Meet AfroDaddy Our Cover Star and Fatherhood Influencer

O

ur cover star, Terence Mentor, has been a registered donor since 2012.

He is the creator of AfroDaddy, a parenting website for South African fathers. Terence is a bone marrow advocate and recently hosted Kwanga, the Registry’s mascot who spent this winter on tour raising awareness about bone marrow – while wearing a mask, of course!

Below, Terence shares his thoughts on being a father and registered donor.

“My SABMR card is like a badge of honour. Signing up to be a donor can feel big, complicated, and scary, because the diseases bone marrow transplants treat are big, complicated, scary diseases.

I had fears too, but the more I learned, I realised it’s not what I thought. You can save someone’s life, for just a little bit of discomfort on your side.

CITADEL PHILANTHROPY FOUNDATION

THE VICTOR DAITZ FOUNDATION

DOLCE BAKERY

FLEMING FAMILY FOUNDATION

MR PRICE

ANN KREITZER

HENECK FAMILY FOUNDATION

SORBET CANAL WALK

WILDNER FOUNDATION

SHUTTLE KIDZ

HC ADAMSTEIN WILL TRUST

JULEKA4GOOD

ASPEN

CAROLINE FINE FLOWERS

“We need more people of colour to register, because most patients find donors from the same ethnic background.

We’re talking about diversity and representation in all these other areas – which are important – but we need to talk about it here too. There is no reason why more people of colour shouldn’t be registering; there isn’t anything preventing them from doing so.

“I have two roles as a parent: to prepare my kid for the world, and to prepare the world for my kid. That’s why I’m sending them to a good school, teaching them to swim, fighting for important social issues – and trying to make sure the Registry has donors for them if they got sick. I want to make sure that if they get sick, the systems in place to help them are prepared to do so.”

YOUR HERITAGE Can save a life HERITAGE IS IN OUR BONES, JUST LIKE MARROW. SHARE IT WITH THE WORLD.

REGISTER IN 2 MINUTES

SABMR.CO.ZA