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  1. Online Community Just for Sickle Cell Warriors Launching Soon

    November 28, 2017 by Andrea
    Online Community oneSCDvoice

    Photo: Twitter/oneSCDvoice


    A new site aimed at providing not only sickle cell-related news and resources, but also a means of safely connecting to others in an online community is launching next month. The brainchild of parent company RareLife Solutions, oneSCDvoice is "an educational platform that gathers credible disease and lifestyle information to empower people impacted by SCD." 

    Pre-registration for this online community is already taking place, and it's completely free. According to oneSCDvoice's website, your registration will unlock a library of trusted sickle cell resources, clinical trial news and updates, and a "SMART Social Wall" where you can communicate not only with other warriors, but also with caregivers, researchers, advocates, and more. 

    OneSCDVoice is RareLife's flagship platform, so it's probably safe to say that if all goes well with this launch, we can expect other online communities for other rare diseases to come along in the near future. "We look for the solution where it may not already exist," RareLife states on its site. "We build things to fill voids, we listen, watch and learn for insights and opportunities to truly be of service to people impacted by rare disease." 

    Have you signed up for oneSCDvoice yet? What are you hoping to gain from using this platform? Tell us in a tweet (@XickleRBC)!


  2. 3 Benefits of Being Thankful All Year Long

    November 20, 2017 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    It's Thanksgiving Week here in the United States, and in the midst of prepping to travel, welcome arriving family and friends, and/or cook up an epic holiday feast, gratitude is foremost on everyone's mind. But gratefulness should be a priority year-round. In fact, science even says that it can improve your overall health -- something that's especially important for sickle cell warriors. Here are three benefits of maintaining that spirit of thankfulness all 365 days.

    1) It can reduce anxiety and depression.
    When crises occur, it can be difficult to keep a positive outlook. And while finding something to be thankful for during times of pain, worry, and sadness can seem almost impossible, working hard at doing just that has been proven to actually rewire your brain, leading to more feelings of happiness in general.

    2) It can improve your immune system.
    As a sickle cell warrior, keeping your immune system as healthy as possible is paramount to avoiding illnesses, such as the flu, as complications requiring hospitalization can arise much more easily than in people without SCD. One recent study by researchers at the University of Utah and the University of Kentucky found that people who consider themselves to be optimistic actually had more disease-fighting cells in their bodies.

    3) It can make you more resilient.
    Being thankful helps lessen cortisol levels caused by stress and also helps people become better able to surmount traumatic obstacles in their lives. According to Forbes, a 2006 study revealed that "Vietnam War Veterans with higher levels of gratitude experienced lower rates of Post-Traumatic Stress Disorder."

    To discover even more ways expressing gratitude is good for you, check out this infographic created by CBS News.

    How do you plan to practice thankfulness this holiday season and beyond? Tell us in the comments below!

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  3. The McCourty Twins are Coming Through with a New SCD Fundraiser

    November 13, 2017 by Andrea
    Photos: Instagram/mccourtytwins; ISlide

    Photos: Instagram/mccourtytwins; ISlide



    NFL stars Devin and Jason McCourty are always representing the SCD cause through their Tackle Sickle Cell campaign, which, according to their website "aims to educate the public, increase blood donations, and raise money and awareness" for this inherited disorder. They first became aware of sickle cell as kids because their father carried the trait and an aunt and uncle lived with the disease. "I remember we took a blood test at 5 years old to see if we carried the trait, as well, and it was a relief when we learned we didn’t,” Devin stated on their website, tacklesicklecell.org. Jason continued, "Growing up, we were very close to our aunt Winifred, and she battles with the disease daily going through many trials and tribulations. Her passion to keep fighting through everything that comes her way has driven us to try to make a difference and draw awareness to the terrible disease."

    Besides their periodic casino night-themed fundraisers and hosted blood drives, this year, as Boston's Fox 25 News reports, the duo has partnered up with ISlide4Good to sell their own custom flip-flops. Each pair sells for $49.99 with Tackle Sickle Cell receiving $20 of each sale to put toward the Embrace Kids Foundation and sickle cell research. 

    Launched in 2013, ISlide is a footwear company that allows their customers to personalize their footwear, the slides (slip-on flip-flops) became the most popular option. Then came ISlide4Good, a "program that helps bring awareness and fundraising to sport-based nonprofits locally and around the country." Teaming up with a new nonprofit each quarter,  ISlide provides a unique fundraising opportunity.

    The McCourty's campaign runs through Black Friday, so it's the perfect way to kick off your giving (and giving back). To help the twins reach their goal of $10,000, click here to snag your own set of slides.

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  4. Your Favorite Children’s Author Just Came Out with a Book About Sickle Cell

    November 6, 2017 by Andrea
    Little George

    Photo: roalddahl.com



    Children love stories, and stories are one of the best ways to teach kids things they need to know in a way that's relatable, fun, and interesting to them. One of those things is sickle cell. Fortunately, more books are starting to be published for kids to help them understand what sickle cell is from a young age -- whether they need to know what's going on inside their own bodies, or you'd like them to have an understanding about important health concerns that affect other kids (and adults) like them. If you haven't already, definitely be sure to check out "The Adventures of The Sickler" and "My Friend Jen," and then add our latest discovery to your collection, too -- one that comes from the organization of the late author of "Charlie and the Chocolate Factory" and "Matilda," Roald Dahl.

    Funded by a trio of foundations -- Roald Dahl's Marvellous Children's Charity, The Burdett Trust for Nursing, and Twin Visions charity -- the new (free!) booklet, "Little George and the Dragon" tells the story of Little George, a sickle cell warrior, who helps his neighbors deal with a painfully annoying dragon who dropped out of the sky and onto their street by teaching them about how he deals with sickle cell, which can also be painful and annoying.

    Besides the book, which you can read for free here, there's also an accompanying app of the same name. "An informational game about sickle cell anaemia," this app also takes you through the story of Little George learning how to cope with his own SCD.

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