Autumn 2012 SC News Wrap Up


International News

Despite being equipped with high-end machinery required to conduct prenatal diagnosis of sickle cell disease, the Indira Gandhi Government Medical College and Hospital (IGMCH) has kept them unused. Also in India, the government is preparing to launch prenatal testing in its major districts. Read more about that HERE.

Bahrain sickle cell warriors are still dying regularly at Salmaniya Medical Center. Someone needs to set up better protocols for sickle cell patients…this is beyond tragic.

In Nigeria, the Federal Medical Center called for collaborated efforts in dealing with the challenge of Sickle Cell Disorder (SCD) in the country. If you do have sickle cell, STOP TAKING BLOOD TONIC preparations because it will lead to IRON OVERLOAD.

On the Research front, the Emmaus CEO issued a statement of the L-glutamine trials for sickle cell disease, which is now in phase 3. Read the statement HERE.

In Kashmir,  a scientist has applied for a patent in the World Intellectual Property Organization (WIPO) for the development of an effective herbal drug for treatment of sickle cell disease. Hard to get any other details, but hopefully we will hear something on this front in the next few years.

Research & National News

Yetunde Felix-Ukwu (a warrior on facebook) was one of the first people to undergo the half-match bone marrow transplant. Read more about the research study and her amazing results here, and contact Johns Hopkins for more information. This is a first step toward finding a cure for sickle cell for those that do not have active full HLA matches. It’s definitely hopeful.

Adventrx has moved to phase III on it’s sickle cell drug ANX-188. This med works during crisis to reduce clumping. Read more about it HERE.

Gamida Cell Ltd., a world leader in stem cell population expansion technologies and stem cell therapy products for transplantation and regenerative medicine, announced today that the first patient, enrolled in its pilot study of NiCord(R) as an investigational treatment for sickle cell disease (SCD), has been transplanted at Duke University in North Carolina. Another HUGE stride in research. I’m almost doing a happy dance over here.

A study recently published showed that children with sickle cell disease are vulnerable to cerebral infarcts from ‘silent strokes’ in childhood. This is the finalized publication from the research news that broke about it last year. Read more HERE.

Another published study by Drexel University broke down the etiology of what happens in the cell during a vaso-occlusive crisis. If you’re interested, the link is here. All I know is that it effing hurts!

Children and their families grappling with sickle cell disease are able to experience special programming offered by The Hole in the Wall Gang Camp, thanks to a $100,000 leadership grant from the Aetna Foundation, the philanthropic arm of Aetna. Those of you that live close to or in Conneticut, this camp might be your new summer hangout.

In the UK, Homerton Hospital has expanded it’s facilities to open a day unit for those with sickle cell disease. Read more HERE.


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