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  1. “Still Standing” Documentary and its World Sickle Cell Day Premiere

    June 22, 2016 by Andrea
    Photo: Twitter

    Photo: Twitter



    You may remember that during Black History Month, we wrote a post recognizing a few people who've dedicated their lives to raising awareness for sickle cell disease. One of those people was Toyin Adesola, a native Nigerian and sickle cell warrior. At the time of that first post, her 2005 autobiography, "Still Standing" was being made into a film. And yesterday, appropriately World Sickle Cell Day, the documentary premiered both online and offline.

    An International Christian Film Festival nominee for Best Director, Most Creative, and Official Selection in the documentary category, as well as an Impact Awards Doc U.S. and International Film Festival, Indonesia winner, "Still Standing" tells of the struggles and accomplishments of Toyin, who was diagnosed with SCD when she was 6 years old. "Growing up, I had the regular pains. And those pains are not something you'd wish on your enemy. Sometimes, even morphine does not even hold that pain down," Toyin explains in the doc.

    She shares that she dealt with depression and fear growing up, as well, but also says that she saw herself doing so much more than simply existing, surviving. She knew she wanted to make a difference and credits going back to school and renewing her faith as major turning points in her life. "I'm driven by God ... my faith in God, and that's why I'm still here. Secondly, just the passion to be able to do things, to achieve things. To know that, yes ... I've been able to give my all," she says in the film.

    Watch the full documentary here (it's only 14 minutes and 30 seconds), and let Toyin tell you her story of strength and perseverance.

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  2. How People Plan to Celebrate World Sickle Cell Day Around the World

    June 14, 2016 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    World Sickle Cell Day is Sunday, just six days away. Here are just a few examples of how warriors all over the world are planning to celebrate and raise awareness:

    NIGERIA
    Presented by the Sickle Cell Aid Foundation, several events will be held in various parts of the country. Examples of these events include free genotype testing and genetic counseling, visits to sickle cell warriors in hospitals, awareness walks, art exhibit, and more. Plus, there will be a companion social media campaign, so that others outside of Nigeria can also participate.

    UNITED STATES
    While there will be hundreds of events across the 50 states, we'll be highlighting one in Michigan for this post. Hosted by the Michigan Chapter of the SCDAA, "High 5 for Sickle Cell" will be a campaign focused on educating people about five facts and myths related to sickle cell disease. As the Michigan Chronical reports, the five items to be addressed are as follows: pain, lifespan, trait, treatment, and race.

    CANADA
    This year, the Sickle Cell Disease Association of Canada is taking action by setting up blood drives throughout the country. Click here to learn how to register yourself (along with your family and friends!) and find a clinic near you.

    UK
    It's all about a day of family fun to raise awareness for SCD in Wolverhampton. This third annual World Sickle Cell Day event, held at Hickman Park in Bilston, will include a host of games, refreshments, live music, raffle prizes, and more!

    What events are going on near you? Leave the info in teh comments below for others to see and join!

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  3. 6 Quick Facts You May Not Have Known — But Should — About Xickle RBC-Plus

    June 6, 2016 by Andrea
    Photo: Startup Stock Photos

    Photo: Startup Stock Photos



    You see us pop up on your Twitter timeline every day, sharing our posts about sickle cell awareness and education. But, behind the scenes, we've got a lot more going on. Here are 6 things you may not have known -- but should -- about Xickle RBC-Plus.

    1. Xickle RBC-Plus is an all-natural supplement with a formulation that helps red blood cells maintain a healthy shape and prevents clumping of cells, even during low blood oxygen conditions.

    2. Basically, Xickle RBC-Plus is a new, improved form of Niprisan/Nicosan, which was approved for sickle cell treatment in Nigeria 10 years ago.

    3. One of the main ingredients in Xickle RBC-Plus is sorghum, which is known to posses anti-sickling activity. The sorghum seeds were collected from 19 different countries, and once the leaves started to sprout, they were analyzed for their anti-sickling properties at the Sickle Cell Disease Reference Laboratory located at The Children's Hospital of Philadelphia.

    4. Prior to our human clinical trial, Xickle RBC-Plus became one out of 700 compounds tested by the Sickle Cell Disease Reference Laboratory shown to be effective in treating mice with human sickle cell disease.

    5. We are currently in the process of obtaining FDA approval. For a little more than a year, we've been conducting a clinical trial in which participants were given the drug equivalent of Xickle RBC-Plus. At certain intervals during the trial, blood was drawn from each participant and placed under low oxygen conditions, so that the reactions of the treated red blood cells could be studied.

    6. Xickle RBC-Plus has no known toxicity, so it can be safely used to help prevent red blood cell sickling it warriors of all ages. In fact, in pre-clinical studies, Xickle RBC-Plus was shown to be safe at more than 100 times the recommended dose.

    Have more questions? Contact us during normal business hours (9 a.m. to 5 p.m. CT) at 855-994-2553.


  4. Nigeria Receives Generous Donation from Billionaire to Build a Sickle Cell Clinic

    by Andrea
    re:Splashed

    re:Splashed



    In the United States, sickle cell disease is seen as a rare disorder with just about 1,000 babies being born with the disease each year. But, as we know, SCD is a global health concern, and in contrast, sickle cell is quite common in sub-Saharan Africa -- especially in Nigeria. It is estimated that there, more than 100,000 babies are born with SCD each year.

    That's why the announcement made on May 29, 2016 that oil tycoon and Nigerian billionaire, Prince Arthur Eze donated N5 million (about $25,100 in U.S. money) to the Association of People Living With Sickle Cell Disorder is so important and exciting. As reported by AllAfrica.com, the money is set to go toward the building of a new sickle cell clinic. "The clinic shall be of a world class standard and shall cater for the medical, psychological, and physical care of all sicklers in the state, and it shall be named after Eze, the sole donor of the project," Aisha Edwards, the Association's co-coordinator, told AllAfrica.com in a recent interview.

    This clinic will help knock down some barriers when it comes to making affordable, specialized, and immediate care available to Nigerians living with SCD.

    For more information on this project, read the original article in its entirety here.


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