|
By Sean Marshall
It was a slow news week for sickle cell this week. The only real announcement was that the annual Sickle Cell Telethon in Texas "may have a difficult time this year serving families in the area because a major fundraiser has been postponed." It was explained in the past that The Central Texas Sickle Cell Anemia Association has risen over $17,000 in funds in 2015 but due to a funding gap they had to postpone to a later date. If you're interested in the article or how to contact The Central Texas Sickle Cell Anemia Association their details as well as the original article can be found here: http://www.tdtnews.com/news/article_183a0692-c17b-11e5-8957-9fd83f9d55aa.html We will continue to follow this story as it unfolds. If there are any comments, ideas for the future, questions or concerns email us at [email protected]
1 Comment
By Sean Marshall
It was reported this week by Information Nigeria that famous Nollywood actress Mercy Aigbe,37, has just been endorsed as an ambassador of the Dubai Africa Sickle Cell Project. For those not in the loop Nollywood refers to the Nigerian Hollywood film industry and Mercy Aigbe is considered a big deal in her industry. This was all because the passing of Aigbe's late sister Joy. Her death involved complications due to sickle cell anemia. This was the driving factor that allowed Aigbe to take up the fight against sickle cell. Although it doesn’t sound like the most prevalent news to most outside of Nigeria the Dubai Africa Sickle Cell Project is hoping for attention as Aigbe is the first ambassador the organization has ever had. If they can receive the spotlight for even a moment to promote sickle cell awareness it will be worth it. Especially if the news even gains some much needed funding as a result. We have seen this before in the NFL with the McCourty or with supermodel Jourdan Dunn. The concept isn't new but it is always welcome. It reminds many that sickle cell disease is still out there and that it is still dangerous and still has a strong impact on the world. The Sickle News will continue to monitor news channels to see how Aigbe's presence affects sickle cell awareness in the future. The original article can be found here: http://www.informationng.com/2016/01/nollywood-actress-mercy-aigbe-signs-on-as-ambassador-for-sickle-cell-initiative.html If there are any comments, questions, concerns or ideas for future articles send them to [email protected] By Sean Marshall
This week it came to light that by the PBR Regulatory Affairs review board that the “clinic-stage bio-pharmaceutical firm Global Blood Therapeutics (GBT) has secured orphan drug designation from the US Food and Drug Administration (FDA) for GBT440 to treat sickle cell disease.” That was a lot of information to take in but the basic concept behind it is that a new sickle cell fighting drug is in the clinical stages, making it one step closer to everyday people. The drug titled GBT440 is meant to be an “oral, once-daily SCD therapy that works by increasing hemoglobin’s affinity for oxygen.” The drug itself would undue one of the biggest risks of sickle cell disease. It could in fact reduce the levels risks of stoke for anyone taking it. It's also worth noting that Global Blood Therapeutics announced some of their testing plans. “the company is investigating the drug candidate in both healthy subjects and SCD patients in phase ½ clinical trial.” It was also explained that “the efficiency of GBT440 is being evaluated on polymerization of deoxy-hemoglobin, the mechanism of red blood cells sickling.” All access to the results are to be available late 2016. The PBR Regulatory Affairs report can be found here: http://regulatoryaffairs.pharmaceutical-business-review.com/news/fda-grants-orphan-drug-designation-to-gbt440-to-treat-sickle-cell-disease-040116-4766214 Other news this week included a Ministry of health announcement from Bahrain's health department that there is no shortage of morphine due to the treatment of sickle cell patients. The country of Bahrain is a small island n the Middle East. Like most of the world they to struggle with sickle cell disease. Unfortunately there have been rumors of a shortage of morphine. This in turn lead many with sickle cell disease to go through the pain their affliction causes without any form of relief their government could provide. Luckily their ministry has stressed that this was just a rumor and that “it is closely monitoring all medication needs of the sickle cell patients in accordance with the new treatment protocol taken in light of the recommendations of a group of experts from the US-based Johns Hopkins Hospital.” he press release can be found here: http://www.bna.bh/portal/en/news/704563 Like always if anyone wants to comment ask questions or bring up new ideas The Sickle Cell News can be reached at [email protected] By Sean Marshall
Welcome back to the Sickle Cell news. After a short break due to the holiday season we are proud to be updating and is better then ever. According to the Mercury News the Stanford School of Medicine is utilizing pipettes DNA for gene editing of stem cells. This is all in an attempt to eradicate harmful diseases like sickle cell anemia. As of right now it has been reported that “tiny vials of recently repaired blood cells are thriving in a Stanford incubator, proof that a powerful new gene-editing technique is fixing errant genes that cause so much human suffering.” This means that the breakthrough that is gene editing is getting closer and closer. This is all capable because of new technology called “CRISPR-Cas9, acts as a microscopic scalpel, performing genomic surgery with a precision, efficiency and affordability once thought unimaginable.” The technology know as CRISPR-Cas9 actually “acts as a microscopic scalpel, performing genomic surgery with a precision, efficiency and affordability once thought unimaginable.” This technology has been mentioned before on sickle news but this is one of the first instances that the technology has been used to actually cure or in the very least make progress towards curing. That isn't to say that CRISPR-Cas9 has not been used to it's full potential but most news coverage is on the device itself and what it could do rather then what it actually is doing. It was also explained that “the research being done at the Stanford School of Medicine, led by Dr. Matthew Porteus, is part of an accelerating research movement made possible using the new technique to try to cure genetic diseases such as sickle cell anemia and muscular dystrophy.” It's also worth mentioning that this wouldn't have been possible without companies raising large sums of money to keep the labs afloat. This was so prevalent that the article actually mentioned that the university takes outside donations in order to keep the very expensive equipment running. This could mean however that if sickle cell anemia is cured it could be month or even years before it makes it's way to the general public and that said cure would be pricey and most likely involve a length stay in a hospital. This is of course speculation and only time will tell what truly happens all we can do is hope a cure does come fast. The original article can be found here: http://www.mercurynews.com/science/ci_29333667/stanford-bringing-gene-editing-patients-deadly-diseases Like always if you have any comments, questions, concerns or idea topics email us at [email protected] |
AboutThis section is solely to let our Sickle Soldiers tell their story trials & tribulations alongside things they feel are wrong in the Sickle Cell Community Archives
March 2016
Categories
All
|
RSS Feed
