Leukaemia is no longer the death sentence that it was 20 years ago - In 1999 there were 800 donors on the registry. The Sunflower Fund has assisted to increase this number to over 65 000 to date.
The Sunflower Fund aims to educate and recruit a viable source of well-informed potential bone marrow stem cell donors who are ethnically diverse, in an effort to save the lives of those needing a transplant when suffering from life-threatening blood disorders. It strives to maintain the associated donor records of the South African Bone Marrow Registry (SABMR).
In carrying out its activities THE SUNFLOWER FUND raises funds which are used :
To promote public awareness of leukaemia and other life-threatening blood disorders through education and similar programmes to -
- Recruit bone marrow stem cell donors for the SABMR.
- Meet the costs involved in tissue-typing samples provided by donors.
- Assist in the regular and on-going updating of donor particulars on the National Registry database.
- Assist, where possible, in meeting the costs of certain searches of the National Registry
Tissue Typing Tests :
It is critical that donors and patients are well matched in order for the transplant to be a success and this is the reason that the tissue typing test is so important.
If we were lucky enough to have an identical twin, we would have a perfect match. There is a 1 in 4 chance of having a sibling that matches. But 75% of patients are not this fortunate and have to look to the bone marrow registry for an unrelated matched donor.
- In February 2003, the basic test cost R300.
- In 2007, the test cost R1000.
- Today the improved molecular (DNA) test costs R2000.
In January 2012, The Sunflower Fund moved to the internationally recognised level of testing, namely molecular (DNA) testing.
Internationally recognised, this is a far more accurate form of testing and helps speed up the search and match process for a patient.
This is an advantage in terms of better patient/donor match and search time:
- Most overseas registries have their donors typed to this level as it provides important additional information when looking for a matched donor.
- There is also a time factor involved when searching for a suitable donor.
- This speeds up the donor search-and-match process.
- The importance of molecular (DNA) typing all donors is emphasized by the decision of the World Marrow Donor Association to make this level of typing a standard for all registries.
- There are 69 registries world-wide and 46 cord blood banks (from 48 countries). The total number of donors and cord blood units world-wide: 20 934 349. (Over 20 million).
- Thus the overall world HLA-ABDR percentage is 88.8%.
- Paying for molecular (DNA) testing of donor samples at a cost of R2000 each is the main activity of The Sunflower Fund.
The increased cost of molecular (DNA) typed donors and a decrease in the ability of donors to pay for their own tests, as well as an increasingly tough fundraising environment and the deteriorating economic climate, have placed an enormous burden on The Sunflower Fund.
Recruited donors assist The Sunflower Fund by paying for their own tests or donating something towards the cost of their test if they are in a position to do so. It is very important to note that no one is turned away. If donors are not able to contribute towards the cost of their test, they are put onto a waiting list which is assessed every 2 weeks and registration forms are processed as funds are available.
Education, awareness and the recruitment and testing of donors are inextricably linked. The one activity cannot happen in isolation of the other. They are an integral part of every project The Sunflower Fund embarks on.
In order to continue this valuable work, The Sunflower Fund needs on-going assistance from the public and corporates in South Arica. Funds will be used to pay for tissue typing costs and to support education, awareness and recruitment drives.
We would like to request funding to sponsor the molecular (DNA) tissue typing of 500 new stem cell donors of ethnic diversity at a cost of R2000 per test in 2013. The amount we are therefore hoping to raise through this project is R 1 000 000.00.