A little history about the Sunflower Fund

SUSTAINING AN EFFECTIVE SABMR

The South African Bone Marrow Registry (SABMR) is in desperate need of donors from all ethnic groups and mixed ethnic backgrounds.

Regrettably, the SAMBR does not receive any government funding towards the cost of tissue typing the blood samples and exists solely on donations from the public.

Without financial support the work of the SABMR would come to a complete halt and bone marrow transplantation would no longer be a treatment option in South Africa.
This is why The Sunflower Fund (Friends of the South African Bone Marrow Registry) was formed in 1999.The Sunflower Fund is a non-governmental, non-profit organisation based in Cape Town, South Africa, with a vision to give all South Africans diagnosed with leukaemia and other life-threatening blood disorders the chance of life, irrespective of their race and financial circumstances.

The Sunflower Fund’s core purpose is to educate, recruit and raise funds to build and sustain an effectiveSABMR as a viable source of well informed ethnically-diverse potential bone marrow donors so as to meet the national and international requirements and improve the chances of life-saving transplants for serious blood disorder sufferers.


Sunflower Achievements

So far, our efforts - with the support of many others - have increased the donor numbers on the SABMR from a mere 1,200 in 1999 to over 65 500 today! Also, since April 2003 to date, The Sunflower Fund spent just over R4 million on tissue typing throughout South Africa. This is a wonderful achievement, yet more needs to be done.

Due to the 1:100 000 chance of finding a compatible donor, at least 100 000 donors are needed for a Registry to function effectively and in South Africa, the Registry should ideally have 400 000 donors representative of all ethnic groups.

Link : http://www.sunflowerfund.org.za/index.php/2011-10-06-09-43-53/our-mission

65, 000 donors is a great achievement but the odds are against this wonderful organisation... If you are over 18, please become a donor and please let your family and friends know about this wonderful organisation and help them save more lives!

Causes of leukemia

So, I found this site which gives a lot of information about leukemia and I have put some part of it here:

Symptoms of leukemia

• Blood clotting is poor - As immature white blood cells crowd out blood platelets, which are crucial for blood clotting, the patient may bruise or bleed easily and heal slowly - he may also develop petechiae (a small red to purple spot on the body, caused by a minor hemorrhage).


• Affected immune system - The patient's white blood cells, which are crucial for fighting off infection, may be suppressed or not working properly. The patient may experience frequent infections, or his immune system may attack other good body cells.


• Anemia - As the shortage of good red blood cells grows the patient may suffer from anemia - this may lead to difficult or labored respiration (dyspnea) and pallor (skin has a pale color caused by illness).


• Other symptoms - Patients may also experience nausea, fever, chills, night sweats, flu-like symptoms, and tiredness. If the liver or spleen becomes enlarged the patient may feel full and will eat less, resulting in weight loss. Headache is more common among patients whose cancerous cells have invaded the CNS (central nervous system).


• Precaution - As all these symptoms could be due to other illnesses. A diagnosis of leukemia can only be confirmed after medical tests are carried out.

What causes leukemia?

Experts say that different leukemias have different causes. The following are either known causes, or strongly suspected causes:

• Artificial ionizing radiation
• Viruses - HTLV-1 (human T-lymphotropic virus) and HIV (human immunodeficiency virus)
• Benzene and some petrochemicals
• Alkylating chemotherapy agents used in previous cancers
• Maternal fetal transmission (rare)
• Hair dyes
• Genetic predisposition - some studies researching family history and looking at twins have indicated that some people have a higher risk of developing leukemia because of a single gene or multiple genes.
• Down syndrome - people with Down syndrome have a significantly higher risk of developing leukemia, compared to people who do not have Down syndrome. Experts say that because of this, people with certain chromosomal abnormalities may have a higher risk.
• Electromagnetic energy - studies indicate there is not enough evidence to show that ELF magnetic (not electric) fields that exist currently might cause leukemia. The IARC (International Agency for Research on Cancer) says that studies which indicate there is a risk tend to be biased and unreliable.

The link to this site: http://www.medicalnewstoday.com/articles/142595.php

So get this - you can get leukemia from a genetic disposition - that is something really new to me... I never thought that genes could play a role in having or not having leukemia... It opened my eyes, has it opened yours? Also, some of the other ways one could get leukemia are astonishing - I never would have thought that hair dyes could play a part in someone having leukemia...

What your money does for children with genetic disorders?

So, I went to the official site for Jeans for Genes and I found this:

• £10 will pay for 60 minutes of specialist telephone advice for parents caring for a child with severe neurological genetic conditions.  
• £50 will pay for a mother to attend a support day, giving her the help she needs to care for an extremely rare and profoundly disabling genetic condition.
• £100 will help fund an educational booklet, helping teachers to maximise opportunities available to children with inherited learning disabilities.
• £150 will pay for one child carer to enjoy a summer camp, enabling them to meet others in a similar situation, share experiences, reduce feelings of isolation and giving them some much needed fun
• £250 will help fund a website where children affected with sex development disorders can obtain information and support, without the need to disclose their identity
• £500 will pay for 5 families, affected by profound disabilities, to enjoy an adaptive skiing session, where they can have fun, build confidence and friendships with others in similar situations.  
• £1,000 will help fund a film for teenagers with a life limiting condition, helping them to come to terms with, and encouraging them to begin to take responsibility for, their condition.
• £2,000 will help fund a sensory toy warehouse for children with a rare premature aging disorder, enhancing their senses and providing parents with a way to fun and pleasurable way to engage with their child who might otherwise have limited ways of interacting.

Right now, we as a school are just above the £500 mark... and I think we can go past the £1000 mark at least this year, but that will all depend on how the school's community responds....

Just think of the happiness those families will be feeling due to our contribution....

Genetic disorders - their reasons...

I am no expert in biology and I haven't done biology since grade 8 so instead of me making a fool of myself by trying to explain to you all what causes genetic disorders, I found an article... :)

What is a genetic disease?

A genetic disease is any disease that is caused by an abnormality in an individual's genome. The abnormality can range from minuscule to major -- from a discrete mutation in a single base in the DNA of a single gene to a gross chromosome abnormality involving the addition or subtraction of an entire chromosome or set of chromosomes. Some genetic disorders are inherited from the parents, while other genetic diseases are caused by acquired changes or mutations in a preexisting gene or group of genes. Mutations occur either randomly or due to some environmental exposure.

What are the different types of inheritance?

There are a number of different types of genetic inheritance, including the following four modes:

Single gene inheritance

Single gene inheritance, also called Mendelian or monogenetic inheritance. This type of inheritance is caused by changes or mutations that occur in the DNA sequence of a single gene. There are more than 6,000 known single-gene disorders, which occur in about 1 out of every 200 births. These disorders are known as monogenetic disorders (disorders of a single age).

Some examples of monogenetic disorders include:

• cystic fibrosis,
• sickle cell anemia,
• Marfan syndrome,
• Huntington's disease, and
• hemochromatosis.
  
  
  This is the link of the website - http://www.medicinenet.com/genetic_disease/article.htm

1 in 200 births..... That is a very high number.... I guess genetic disorders are more common than I thought... This has given me more encouragement to do what I am doing... Hope some of you also think about contributing to this cause....

Vacations!

So, I am now on vacation and I will try to keep the blog updated as much as possible, but I don't think I will be able to update it every week... So my target is once in two weeks... Let's see how well that goes :)

In the mean time - I will leave you all to think about this:

I came across this while I was researching for Jeans for Genes and Sunflower Fund....

A complication

It seems like I won't be able to tell all the students about the fashion show this academic year, since I haven't been able to write up the proposal form and an email to the parents due to my presence at Group 4 and next week school camp... I feel very bummed out... I had really wanted students to be able to work on this during the holidays but it seems like that is not going to happen anymore... I will have to do something in the first 2 - 3 weeks in next academic year so that students get enough time and we have a good number and quality of entries to be judged...

Well, that is about it today, I have to go and first unpack my bag from Group 4 and then pack my bag for the school camp...In the mean time, let me know if any of you have any ideas about the event - as always, I am open to suggestions :) 

Final ideas

So, I know, I haven't written in a veeeeery long time but that was due to my final exams. Now I have thought a lot about what I am going to do for the two special days and I think that these ideas will work very well and will be nice for the students.

So my idea for Jeans for Genes - have a fashion show where students customise a pair of old jeans and the most creative one will recieve a prize (the identity of the prize is a secret!) and so will the two runners-up. We will have a panel of jury and maybe we will have the students vote also.

We can have like a certain section for customised bandanas as well and we will have categories for prizes like best design, most cute, most funny etc. We can make this into a huge event and with the right planning and volunteers, I think I can pull this off. 

I will need a new proposal form T.Hung - please could you email me the form? After I have done the proposal form, I will first find a panel of jury and then prepare an email that will go out to the whole school. Hopefully, I will be able to finish this by the end of the school year, so all the students can start brainstorming and can start their respective projects.

And everyone else, I would love your views about this and if you can think of anything else, please don't hesitate to inform me by posting a comment!