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February 7, 2011: This Fortnight in SC News & Research

A torch is passed in Canada, a tragic death in UK, a new research study could lead to the latest sickle cell drug and the TX SCD group raised 15K in one day. Get your SC news feed here.

The Ealing, Hammersmith and Fulham Sickle Cell and Thalassaemia Support Group in the UK have created a new scholarship for sickle cell patients who wish to pursue further education. Entries must be received by February 25. They will be judged by a panel of experts before winners are announced on March 19. If you are in the UK, this would be perfect for you to apply. Learn more about this scholarship HERE.

Did you know that the Pittsburgh Steeler’s safety Ryan Clark had sickle cell trait? Apparently a few years ago, he was so sick from an infected spleen and really bad anemia that he dropped out of his team and thought that he was going to die. Fortunately he survived and he played in the Superbowl yesterday. Read more of his inspirational story HERE. (Personally, it sounds like he had a full sickle cell crisis when he was laying on the bathroom floor.) How many of us have been there, done that?

In Canada, Mayor John Fenik will be presented with the “Torch of Life” by a group which will be traveling 500 kilometres, from Parliament Hill in Ottawa to Queen’s Park in Toronto. The run, designed to raise funds and awareness for sickle cell disease, a genetic blood disorder affecting people of African descent, started Feb. 1, coinciding with the beginning of Black History Month.  Read the full story HERE.

By now you have all probably heard about the tragic demise of Sarah Mulega, a UK sickle cell warrior who had called the ambulance in sickle cell crisis. When they arrived, the EMTs refused to care for her or take her in the hospital because she had soiled herself. She was incorrectly diagnosed with swine flu, when in fact, she was having a pain crisis. The EMTs even derided her, and then left. By the time another ambulance arrived a few hours later, Sarah had already died. This is a senseless tragedy and it is shocking that stuff like this goes on in ‘civilized’ countries. We really need more education! The medics have since been suspended after an outcry by the community and SCD assocation. Read more of this sad, sad and frustrating incident HERE.

Last week, new research results popped up on the horizon. Georgia Health & Sciences University is testing a new compoud called the Aptamer, which was developed by Archemix Corporation in Cambridge, MA. Here is how is works: the aptamer binds to the sticky part of the sickle cell, thereby not allowing the sickle cells to stick to each other or clump up. So far in mice, there has been no immune reaction to the aptamer, and it is non-toxic; although the study hasn’t progressed to humans as of yet. Read more about it HERE and HERE.

Big Kudos to the Central Texas Sickle Cell Association. After a recent telethon, the group was able to raise $15,000 in donations to sickle cell education and screening. It is amazing what a group of dedicated and like-minded, passionate people can do. Read more about the fundraiser HERE.

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Sickle Cell Warrior

Sickle Cell Warrior

Tosin is dedicated to perpetuating healthy and positive messages about sickle cell. Although sickle cell is a subject often taboo in the communities this condition is most prevalent, Tosin's message is that sickle cell is not something to be ashamed of and you can live a rich and fulfilling life with sickle cell. Sickle cell warriors are the most amazing people in the world, with a great fortitude for compassion, willpower and strength.

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2 Comments

  1. Tosin Coker
    Tosin Coker February 08, 05:43

    Mrs Ola-Weissman, you continue to be my shero. More info to be found here about current affairs in the SC community than many major related organisations. Big hugs to you!

  2. Victoria
    Victoria February 17, 04:33

    I cried when I read Sarah Mulega’s story…it’s heart wrenching to think of the magnitutude of challenges SCD presents to innocent persons like my dear son…thank you for telling the story all the same.

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