Sickle Cell Warriors

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Mid-November 2011 News Roundup

Research News

Adventrx shares dropped 25% this week after the company announced that they will be selling shares to fund the next phase of sickle cell research. They are developing the drug ANX-188 which will help during a sickle cell crisis. The company has had issues with the FDA lately, and so need to raise more money in the next 3 months in order to continue to the next phase of testing. Read more about the research study HERE.

Researchers in the University of Michigan have been able to pinpoint the specific proteins responsible for triggering alpha feta proteins in mice. Mice dosed with the T2/T4 proteins had an increase in their AFPs from 7.6% to 18.6%. This is quite promising research because the proteins have been isolated, and hopefully in the future can be synthesized to improve our red blood cells. Read more about the study HERE and HERE.

Also talking about alpha fetal proteins, new research led by Howard Hughes Medical Institute (HHMI) investigator Stuart H. Orkin of Children’s Hospital Boston, Dana Farber Cancer Institute, and Harvard Medical School shows that silencing a protein known as BCL11A can reactivate fetal hemoglobin production in adult mice and effectively reverses sickle cell disease. Now all we have to do is move that research from mice to humans.

National News

In Oakland, Sir David Weatherall, a leading expert with the World Health Organization’s efforts on dangerous hemoglobin disorders, visits model medical clinic and research labs dedicated to hemoglobin disorders at Children’s Hospital & Research Center Oakland. He toured the research facility and expressed his concerns with the fact that sickle cell has become an escalating global problem. Read more about his visit HERE.

There are passionate people in the spotlight that don’t mind carrying the torch of sickle cell, and here is another one. The Wall Street Journal posted a story last week about Santonio Holmes, is a Super Bowl MVP and one of the NFL’s best wide receivers. Watching his young son, Santonio III, suffer with the disease has the New York Jets receiver determined to try to help find a cure. Holmes raised nearly $34,000 for sickle cell anemia research with a charity bowling event Monday night attended by dozens of teammates, including Mark Sanchez and coach Rex Ryan. Read on…

More sickle cell warriors have come out in the news to share their stories with the world. Read about Madison Tully, cured from sickle cell and lupus with a BMT, Katlin Watts in Charlotte, Mills Adams in Charleston (who is Caucasian and has sickle cell), Kyra Wilson in Shreveport. Also last week, another inmate  with sickle cell died in jail in Charleston. Luscious Kelly was brought in a 5am and died 2 hours later under unfortunate circumstances relating to a combination of sickle cell, hypertension, and asthma. How tragic. Please say a prayer for his family. I’m sure this will launch another investigation that will soon be swept under the rug. *sigh*.

International News

In Angola, the pediatric hospital is going to start screening newborns for the sickle cell S gene. They have received funding for an assessment program that will be operational from now until mid-2012. Presently, there are about 100 children seen in the hospital daily for sickle cell.

In a collaborative effort with Germany and Burkina Faso, another sickle cell mystery has been solved: how does having the sickle cell gene protect one from malaria? Michael Lanzer and his colleagues at Heidelberg University in Germany and the Biomedical Research Center Pietro Annigoni in Ouagadougou, Burkina Faso have published a paper that attempts to answer this question. Read more HERE.

In Nigeria, a country afflicted with a high population of sickle cell patients, the Sickle Cell Organization is lobbying with the Federal government to provide free healthcare for those with sickle cell disease. In a country that does not have an insurance system, many patients have to pay all medical bills upfront and out of pocket—which as you know with sickle cell can be very, very expensive. Read more...

Also in Nigeria, they successfully completed the first stem cell transplant that cured a sickle cell patient. Go Nigeria! Several key business executives and companies have created a Sickle Cell Trust Fund, which will help provide money to patients interested in receiving stem and bone marrow transplants to end their sickle cell suffering. It’s great for Nigeria, but sad that nothing like that trust fund exists in the USA.

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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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