The National Bandana Day campaign was launched on Saturday, 15 August and runs until the end of October. Media Update sat down with organisers, The Sundflower Fund to find out more.

What is the aim of the Sunflower Fund? Why was it established?

The Sunflower Fund was originally formed in 1999 in support of the South African Bone Marrow Registry (SABMR) and was inspired by Chris Corlett’s heroic struggle against leukaemia. The Sunflower Fund's overall objective is to decrease mortality rates, in sufferers of Leukaemia and other life-threatening blood disorders, by increasing the number of and access to unrelated bone marrow stem cell donors on the SABMR. 

How does the Sunflower Fund achieve its goals? 

The Sunflower Fund organises and hosts events and campaigns in order to raise funds to educate, recruit and pay the test cost of new donors joining the SABMR. 

Funds are raised, through campaigns like National Bandana Day, to cover the cost of tissue typing all new donors joining the SABMR which cost The Fund R2000 per person. 

Profits from the sale of the bandanas go to The Sunflower Fund in order to raise funds in support of South Africa’s leukaemia patients that are in desperate need of bone marrow transplants. The Sunflower Fund is a national non-governmental, non-profit organisation which runs a toll-free call centre to recruit donor’s representative of all ethnic groups for the SABMR. 

What kind of success has the Fund had since its inception? 

Since 1999 The Sunflower Fund continued to increase the number of stem cell donors in South Africa. At that stage there were only about 800 donors on the Registry and to date the registry has grown to over 70 174 donors. 

Why is it important or why would you urge people to become potential bone marrow donors? To those who do not get the bone marrow transplant they need … what does this result in? 

Patients search for a match from their own ethnic group as it is genetic or DNA match and not blood group matching. With the odds of patients finding a match being 1:100 000, it is imperative that The Sunflower Fund grows this database in order to offer hope for patients suffering with life-threatening blood disorders like leukaemia. 

This is a living registry and we recruit new healthy donors daily, while other donors come off the registry due to age or health issues. 

Unfortunately the field of bone marrow transplantation is complex and a number of patients still die of complications despite the best medical care. Increasing numbers of successful transplants are being carried out using matched unrelated donors. However, donors can only be assured that they offer the hope of a future to patients whose disease would almost certainly otherwise prove fatal. 

In the majority of cases, a bone marrow stem cell transplant is a patient’s only hope of survival and on top of this they are faced with the daunting and traumatic task of finding a matching bone marrow stem cell donor. 

How common is the need for bone marrow stem cells in South Africa?

Dread diseases like leukaemia affect people all over the world, regardless of background, location ethnicity, age or wealth. Every year 1000’s of South Africans are devastated with the news that they have been diagnosed with a life threatening blood disorder such as leukaemia. 

What is leukaemia? How are people with leukaemia affected? Is it a common illness in South Africa? Does it affect a number of youngsters or is it common among youngsters in South Africa? If so what is the age range? 

Bone Marrow is regarded as a factory for the production of red blood cells to carry oxygen, white blood cells to fight infection and platelets to prevent bleeding. Leukaemia is the massive over production of defective white blood cells, which displace normal healthy red and white cells and platelets and thus weakens the body. 

Unfortunately Leukaemia is the most prevalent of the 12 types of Childhood Cancers; many Children need stem cell transplants if they do not respond to treatment. However patients of all ages may be affected and require a stem cell transplant as well.

Does the Sunflower Fund offer patients counselling or refer them to organisations for counselling? What do people how have been diagnosed with leukaemia go through and how do they cope?

A personal diagnosis or the diagnosis of your child has a life-changing and devastating effect. It is an incredibly difficult journey and it is important to have a support system of family and friends to help where and when they can. 

The Sunflower Fund‘s main aim is to increase awareness, recruit and pay the test cost of people joining The Registry. The staff are not medically trained and cannot offer professional counselling, however, The Fund is able to assist with guidance and have a network of professionals to refer should the need arise. 

Are there enough donors to cater for patients in need of a bone marrow transplant in the country?

Definitely not. If you become ill with a blood disorder that requires a stem cell transplant, your Race is of paramount importance. For a successful transplant, donor and recipient must have nearly identical genes directly relating to their DNA and ethnic background. It has nothing to do with your blood type.

The chance of finding a suitable donor is just 1:100 000 within your ethnic group. With only 70 174 people registered in SA, this is a far cry from an effective database which ideally should be in excess of 400 000. The SABMR does not represent the population demographics of SA, therefore it is also critical to increase the number of Black, Indian, Coloured and Asians onto the SABMR. 
How can people help? Donating funds… becoming donors? 

We do urge people who are in excellent health and aged between 18 and 45 to join the national registry. However, financial contributions are also critical to The Fund being able to continue with its important work. 

Each test costs The Sunflower Fund R2000 per person and relies heavily on donations from the public at large and fundraising events such as National Bandana Day to raise these funds. 

How difficult is it to find a match?

Incredibly difficult. Your perfect match would be your identical twin but we are not all that lucky. There’s a one in four chance that one of our siblings may have inherited the same tissue type, but for 75% of our patients they would have to search for an unrelated matched donor on the registry. On average, a patient would need to search through 100 000 people to find their perfect match. 
Can anyone be a donor? What are the requirements? 

Ideally someone who is a committed blood donor is a perfect candidate. However, if you are between 18 and 45-years-old, weigh over 50kgs with a BMI less than 40 and in excellent health please visitwww.sunflowerfund.org.za for more information. 

How are patients and donors matched, and what makes it so difficult to find a match? 

Finding the correct donor match depends on tissue type and because people’s genetic makeup is so varied and their tissue types are inherited characteristics. The chance of finding a suitable match is slim. In South Africa we have even more unique combinations of tissue types and therefore we need a larger registry that proportionately reflects these unique tissue types. 

When a patient is searching for a match, they are looking for a “genetic twin” - someone who carries the same genetic markers as their own and this will be unique to their particular race. So it is almost impossible for an Indian person to match a White person, a Black person cannot match an Asian person and so on. When doing a search, we would only look in your ethnic group and it is purely DNA based and has nothing to do with your blood group. 

What is the actual cost involved? What is your message to them? 

This is a common misconception as there are no costs for the donor as The Sunflower Fund raises funds to pay for these tests costs. 

We do depend largely on donations from the public and also run campaigns like National Bandana Day to raise these funds. 

Why do people not want to become potential donors? 

Unfortunately the most common misperception is that people think being a donor is a painful process. The process does not involve drilling into your bones to remove actual bone marrow. You would be donating stem cells from your blood stream and is much like a blood transfusion or donating platelets. This minor procedure can save a life! 

Another misperception is that the tests may cost the donor money. There are no costs for the donor. The Sunflower Fund raises funds to pay for the donor tests.

What does a person do, who do they contact to become donors? 

If you are interested in becoming a bone marrow stem cell donor, call The Sunflower Fund toll free number on 0800 12 10 82. The Fund will give you all the information you need, go through some important medical criteria and take your details. 

From there you will be directed to your closest Blood Clinic to have your blood sample drawn. It is a simple blood test where only 2 test tubes of blood are drawn from your arm. 

Will there be any fundraising events during this month to raise funds?

National Bandana Day Campaign launches on the 15th August and runs to the end of October. The Sunflower Fund encourages the public to buy a bandana and wear it to show their support towards the brave fight that these patients face on a daily basis. 

This is The Sunflower Fund’s largest fundraiser of the year and funds raised go towards paying for the expensive tissue typing (DNA) tests for new donors to join the national registry. 

For more information on The Sunflower Fund, visit www.sunflowerfund.org.za. Alternatively, connect with them on Facebook or on Twitter.