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  1. Trim Your Tree in Support of Sickle Cell Awareness

    November 29, 2016 by Andrea

    The holiday season kick-off is official: Thanksgiving is over, Black Friday weekend was just in full effect, and holiday music and movies dominate the radio waves and TV channels. What better way to celebrate the season than by trimming your tree in support of sickle cell awareness? Besides using basic red and white lights with solid red and white ornaments, make it clear that your decor is for a cause by snagging a few of these:

    1) I Am A Survivor Ornament, $11, cafepress.com


    2) Sickle Cell Support Circle Ornament, $10, inspiredsilver.com


    3) Hope, Love, Faith Ornament, $24, zazzle.com 


    4) Throwback Song of Peace Ornament, $24, ornaments4less.com 


    5) Unity, Strength, Hope SCDAA Ornament, $3, scdaa-e-store.myshopify.com 


  2. Here’s How to Make the Most of Giving Tuesday

    November 21, 2016 by Andrea


    Still looking for a cause to support this Giving Tuesday (Nov. 29)? Consider donating to a nonprofit that works to improve sickle cell awareness. Every little bit helps, so donate whatever you're able, and then, encourage your friends and family to do the same. Not sure where to start? Check out our round-up of sickle cell charities based at home and abroad: 

    1. Sickle Cell Disease Association of America: The SCDAA is committed to sickle cell research, education, patient services, community services, and giving support to global organizations that work toward SCD awareness. For more than 35 years, this nonprofit has partnered with government agencies, medical facilities, and others to increase funding and understanding of sickle cell. Make a tax-deductible donation here.

    2. American Sickle Cell Anemia Association: The oldest sickle cell organization in the U.S. (going strong since 1971), ASCAA works to provide "quality and comprehensive services through diagnostic testing, evaluation, counseling and supportive services to individuals and families at risk for Sickle Cell Disease." Click here to donate.

    3. Children's Sickle Cell Foundation, Inc.: As an organization specifically geared toward helping kids with sickle cell, CSCF's mission is to "provide social, educational, and economic support for children with sickle cell disease and their families." Not only do they focus on raising awareness for SCD, but for sickle cell trait, as well. Donate here.  

    4. Sickle Cell Society: Based in the UK, SCS uses its donations to fund patient care, research, and educational projects that benefit sickle cell warriors. Some of their project include providing vacations for children with SCD, publishing information literature, and hosting seminars about sickle cell awareness, among other activities. To make a donation, click here.     

    5. Sickle Cell Awareness Group of Ontario: Through initiatives such as community awareness and scholarship grants for students with sickle cell, SCAGO -- a Canadian nonprofit -- is dedicated to improving knowledge of SCD throughout Canada. Here's how you can donate.  

    Which of these organizations do you plan on supporting this Giving Tuesday? Do you have a favorite sickle cell nonprofit that's non included in this list? Add it in the comments below!

  3. The Major Advancement in Sickle Cell Treatment That Has Everyone Talking

    November 18, 2016 by Andrea
    Photo: Public Domain

    Photo: Public Domain

    Over the past week, there have been some exciting developments toward the treatment of sickle cell. One has to do with Xickle's very own journey from supplement status to pharmaceutical drug status (more on this in the coming weeks). Another has to do with the developments in gene editing from scientists at Standford University School of Medicine. 

    At Stanford, those scientists have successfully used the gene-editing tool, CRISPR, on the very gene that causes sickle cell -- mending it in stem cells taken from sickle cell warriors. The study, which was published last week in Nature, discusses how Dr. Natthew Porteus and his team repaired the gene mutation in 30 to 50 percent of cells with SCD. Then, those cells were injected into mice, and according to Reuters, those same cells were still functioning properly 16 weeks later.

    "What we've finally shown is that we can do it," said Porteus in ScienceDaily. "It's not just on the chalkboard. We can take stem cells from a patient and correct the mutation and show that those stem cells turn into red blood cells that no longer make sickled hemoglobin."

    The next step? Human clinical trials. Right now, the plan is to begin those trials in 2018. This is definitely a historic advancement in the treatment of SCD, and we're excited to see where it leads.

    For more information on the study and the process planned for human clinical trials, read the entire articles below:

    1) ScienceDaily: "Step toward gene therapy for sickle cell disease"
    2) Reuters: "Stanford uses CRISPR to correct sickle cell, human trials planned"
    3) TheScientist: "More Success Fixing Sickle Cell Gene with CRISPR"

  4. How Warriors Can Prevent Catching the Flu This Season

    November 8, 2016 by Andrea
    Photo: itsv|Flickr via  CC BY-NC-ND 2.0

    Photo: itsv|Flickr via CC BY-NC-ND 2.0

    As we start to really settle in to fall and winter, we'll begin to see a rise in occurrences of the flu, which brings up an important question: Should you get the flu shot? Short answer -- yes. Here's why:

    As a sickle cell warrior, you're already at a higher risk for developing complications from the flu if you catch it, so preventing that from happening is a must. It is especially paramount when it comes to children with sickle cell. According to a study published by Pediatrics in 2011, the risk of hospitalization in kids with SCD is 56 times greater than that of children without SCD. Because of this, the CDC recommends that everyone living with sickle cell receive the flu vaccine annually, beginning after six months of age. Something important to note this year is that, while the FluMist exists, the CDC is only recommending injectable shots, as they've been shown more effective.

    Furthermore, the Pediatrics study went on to prove that vaccinating sickle cell warriors against the flu does not increase their chances of going into a crisis and being hospitalized for that. Therefore, the flu shot is safe to get. Per their results, they "did not find an association of influenza vaccination and hospitalization for sickle cell crises."

    Typically, it will take about two weeks for the flu shot to build up enough antibodies in your system to provide protection against infection. In the meantime, you can practice other preventative measures, such as hand washing, rest, probiotic intake, and more. Actively working to prevent contracting the flu (and other contagious illnesses) will help you avoid any extra hospital stays, as well as contribute to an overall healthier life.

  5. 5 Urban Legends About Sickle Cell Disease and How to Overcome Them

    November 3, 2016 by Andrea


    This time of year, when darkness falls, it's fun to gather around and share spooky rumors of nearby haunts. When it comes to sickle cell, though, spreading truth is a much better option.

    Here are 5 sickle cell myths and the truths behind them. Arm yourselves with this knowledge, and educate your community to foster understanding and awareness.

    1) Sickle cell is contagious.
    Possibly one of the biggest misconceptions out there, this statement is completely untrue. Sickle cell is genetic, so the only way a person can get it is if they inherit one sickle cell gene from each parent. People cannot contract it through blood transfusions, being near someone with it, or any other way other than genetics.

    2) There is no cure for sickle cell.
    Technically, bone marrow transplantation can potentially cure SCD. However, according to the Mayo Clinic, it's quite difficult to find a donor who's a good match, and the risks of transplantation can be serious. Since donors are scarce and risks are high, treatment is focused on reducing pain and occurrences of crises. The good news, according to Children's Hospital at Vanderbilt, though is that because of major medical advancements in recent years, bone marrow transplants have become safer for children.

    3) People with SCD cannot live long lives.
    This may have been true decades ago -- back in 1973, life expectancy was just 14 years -- but now, we are seeing warriors living well into old age. In 2014, for example, sickle cell warrior Richard Mitchell celebrated 70 years. Last year, a Nigerian woman named Asiata Onikoyi-Laguda celebrated her 90th birthday!

    4) Only Black people can have sickle cell.
    In reality, since SCD affects the blood and all people have blood, anyone can inherit it (see myth #1). It is more common, though, in African Americans because of the gene's beginnings in Africa as a natural protection from malaria. SCD is also common in people from Central and South America, the Middle East, Asia, India, and the Mediterranean, reports the American Society of Hematology.

    5). Sickle cell is the same for everyone.
    Actually, there are several different types of SCD, and some forms -- like sickle cell anemia -- are more severe than others.

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