May 2012 SC News Update
National News
First sickle cell walk in Austin, TX organized successfully by the Marc Thomas Sickle Cell Foundation.
Sickle cell warrior, Judy J. Johnson has released a memoir on sickle cell. It’s essential that we have more and more of us sharing our stories and our lives with the world. Kudos Mz. Johnson! More information will be made available in the bookstore for ordering. Read press release HERE.
The Comprehensive Sickle Cell Center of Memphis is nearing it’s fundraising goal. Good news to the sickle cell patients in TN, soon you will have your very own sickle cell center! WOOHOO! The Center is trying to raise $5 million, so if you have any spare thousands lying around, that may be a good place for you to donate it;)
Meanwhile, also stateside, Emmaus Medical has received both the FDA rights and European Union rights to license, test, and produce their L-glutamine product in the United States and Europe. They are currently in phase 3 trials. Which means, if all goes well, this should hit the market within the next 2 years. From all the chatter I’m hearing, it seems quite promising. Keep your fingers crossed on this one. Read More…
Sangart Inc. received funding for their Carbon Monoxide drug MPO4. We talked about this last year, and it seems like they have progressed further into clinical trials. MP4CO is designed to carry carbon monoxide, which at low doses can reduce inflammation and have other beneficial effects for people with sickle cell anemia. The report is very technical, but read on HERE if you like.
International News
Tanzania held an international conference for sickle cell. They are the 4th highest population of sickle cell worldwide. More efforts will be initiated for surveillance and education, states Sickle Cell Foundation Vice President Makani.
In Nigeria, rumor has it that Niprisan (aka Nicosan) may be coming back to production. I know we’ve been hearing this *rumor* for over 22 months now, but eventually, it’s got to happen. Let’s just keep praying that eventually the country with the highest known population of sickle cell patients will eventually be able to bring this medication back to the manufacturing table, and available for everyone.
In addition, also in Nigeria, a new plant has been studied to have antisickling properties. This plant is called moringa olefiera and it’s method of action is quite similar to fagara root, but is best in its un-synthesized and raw form. “In the study, the researchers tested the effects of extracts made from Moringa oleifera seeds, flower and leaf extract on red blood cells and found they were able to reverse a red blood cell that had sickle back to its normal shape.” I love the strides Nigeria is making in sickle cell research! Read the full article HERE.
Israel (yeah, I said Israel!) enters the research ring with a formidable treatment option for sickle cell. Gamida, a pharmaceutical company was able to raise $10 Million for their research project on thallasemia and sickle cell by taking out some kind of development loan.
StemEx is a graft of an expanded population of stem/progenitor cells, derived from part of a single unit of umbilical cord blood and transplanted by IV administration along with the remaining, non-manipulated cells from the same unit. Competing products in development use two units. As the average cost of a cord blood unit in the U.S. is $40K, StemEx is expected to be a significantly less expensive treatment option. StemEx is also expected to be available in the market several years before any of the competing products. Read more HERE.
In Ghana, it was purported that sickle cell cases are on the rise. For such a tiny country, this can seriously devastate the future generations. Massive education must begin in order to bring down the annual 16,000 birth rate of sickle cell children. Tsk….Hopefully the government will donate more resources into education, in order to stop the spread of this disease. Fortunately for them, the French are helping out with donating and supporting the building of a Comprehensive Sickle Cell Center in Korle-Bu Teaching Hospital in Accra worth over $16 million. Hopefully this will make a strong impact and give those dealing with sickle cell in Ghana much needed medical care and solace.
Bahrain is one of the countries that I find it so fascinating to report about. The Sickle Cell Organization leaders always come out strongly in support of the sickle cell center and sickle cell patients. Currently, they are doing an auction of camel art in order to raise money for sickle cell research. Get a load of the pictures here.
SCD Soldier Network
Very Bright Foundation