The diagnosis of a dread disease like leukaemia is devastating, not only to the individual, but also for their family, friends and colleagues – especially when the only treatment option is a stem cell transplant.
News like this leaves no-one untouched, but the role of The Sunflower Fund is to reach out to this community, supporting both patients and their loved ones in their search for a stem cell match through the Fund’s expertise in increasing donor numbers for the South African Bone Marrow Registry (SABMR).
“One of our very important jobs,” says Alana James, CEO of The Sunflower Fund, “is to ensure that we have an ethnically diverse source of well-informed potential stem cell donors, who are committed to helping others and willing to undergo a relatively painless procedure – not unlike an extended blood donation – to help save lives”.
A patient is only able to search for a match within their own ethnic group, as a stem cell donor needs to be a genetic or DNA match, and not a blood group match. With the odds of patients finding a a suitable person being 1:100 000, it is imperative that The Sunflower Fund grows the registry in order to offer hope for these patients.
“Imagine that you are a patient awaiting a lifesaving stem cell transplant – how you would feel if a match were found and the donor said that he or she ‘didn’t feel like donating today’, or no longer wished to be a part of the Registry? This is a serious commitment and one should consider the full implications for both the donor and the patient when completing the consent form and providing a blood sample for testing,” she adds.
Education, awareness, recruitment and testing of donors are inextricably linked. The one activity cannot happen in isolation of the other. In order to continue this valuable work, The Sunflower Fund seeks ongoing assistance from the general public and corporate SA.
It takes just two test tubes of blood to become registered as a stem cell donor but it costs The Sunflower Fund R2,000 to tissue type that sample at the required molecular (DNA) level. The blood samples are analysed and the individuals’ data is then stored on the SABMR until the age of 60 years old.
There are currently approximately 71 000 people registered on the SABMR (South African Bone Marrow Registry and the Fund’s aim is to achieve their goal of 400 000. In order to ensure that cost is not a limiting factor for a prospective donor, The Sunflower Fund bears the costs of the initial test. It is greatly appreciated when a prospective donor makes a voluntary contribution towards the test cost to allow the organisation to reach more potential donors.
James concludes by saying that even if you are not able to be a stem cell donor yourself, you can still be a lifesaver by donating the funds that make the organisation’s work possible.