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  1. Performance Aims to Bring Sickle Cell Awareness to the Stage

    August 28, 2017 by Andrea
    tough blood performance

    Photo: Twitter/@QuietVoice



    A London-based performance group is using entertainment as a way to increase visibility of SCD for Sickle Cell Awareness Month with a show called "Tough Blood." Infusing "street dance, projection, and sound design," this multimedia program will highlight real stories of real warriors ages 16 through 24 of Caribbean descent to encourage audience members to reflect on the disease and all who are affected by it in some way.

    "Drawing on the history of black resistance and scientific research of the disease, the piece brings personal insight and seeks to open up questions around genealogy and perceptions of Sickle Cell Anemia," states a portion of the production's description on Eventbrite.

    If you live in or around the London metro area, consider adding this event to your Sickle Cell Awareness Month agenda. The show will be held on September 27 from 6:30 p.m. to 8 p.m. at the Copeland Gallery in Peckham, and all funds from ticket sales will be donated to the Sickle Cell Society.

    For the latest details, be sure to follow Tough Blood on Twitter.

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  2. Sickle Cell Warriors and Vision: Concern Extends Beyond the Solar Eclipse

    August 25, 2017 by Andrea

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    We've all been warned never to stare directly in to the sun -- even during a solar eclipse like the one that just passed over the U.S. a few days ago. Doing so could lead to retina damage and permanent vision loss.

    For sickle cell warriors, though, protecting their eyes from the same type of injury is more of a regular concern -- a concern that special glasses cannot prevent. According to the Brazilian Journal of Hematology and Hemotherapy, 42 percent of SCD patients will develop sickle cell retinopathy (a disease of the retina that can cause vision impairment and loss) by the time they reach their 20s. This, like many other sickle cell complications, can be attributed to the retina not receiving the amount of oxygen it needs from the red blood cells.

    And while there may not be a guaranteed way to avoid sickle cell retinopathy, early detection can help and introduce patients to certain therapies, such as laser therapy or surgical options, to curb further loss of sight. "Nobody with sickle cell disease should lose vision," Dr. Adrienne Scott, an assistant professor at Johns Hopkins's Wilmer Eye Institute told the university's "Rising to the Challenge" campaign writers in a recent interview. "We need to conduct the right studies, the right clinical trials to establish evidence-based guidelines on how we should screen sickle cell patients, what imaging tests can best identify those at risk for vision loss, and how early we should intervene with treatment."

    Have you experienced signs of sickle cell retinopathy? Share your story in the comments below.

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  3. 4 Fundraisers to Support In Preparation for Sickle Cell Awareness Month

    August 15, 2017 by Andrea

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    [*NOTE: Each of these fundraisers is hosted on Booster.com (a division of Custom Ink), but all funds will go to the sickle cell group that is organizing the fundraiser. Also, in case you're wondering, the models seen in the mockups are Booster.com's default -- the site does not currently offer models of any other skin tone.]

    September is less than three weeks away, and that means National Sickle Cell Awareness Month is just around the bend. Since 1983, when September was first officially recognized as the month to promote sickle cell advocacy, organizations and individuals across the country have concentrated their efforts through various campaigns. 

    Some groups are getting a jump on their outreach this year by providing apparel for every warrior and supporter to wear next month as part of their own endeavors to educate their communities about this oft-forgotten disorder. Here are four fundraisers to support now -- you'll not only get some new threads that show your support for the cause, but you'll also be helping to fund sickle cell awareness and research projects. 

    1) "Diagnosis is Not Destiny" hoodie
    This benefits Supporting Our Sicklers (S.O.S.) Parent and Guardian Support Group, which "is committed to advocating for, serving, and providing Sickle Cell Disease education to parents and guardians of children with all types of Sickle Cell while supporting research for a cure and improving awareness in the Greater Houston and surrounding areas." Hoodies are only $35, but hurry -- there's just one day left to order. 

    2) "Proud Supporter For a Cure" tee
    This campaign only has 3 hours left (and sadly, no supporters -- yet). Back this nonprofit -- its "mission is to broaden public awareness about Sickle Cell Anemia Disease and the need for better health services" -- before time runs out. One tee is only $20. 

    3) "Hustle Over Pain" tee
    No Pain In the Playroom's goal? To travel to Alabama and speak about sickle cell awareness and advocacy. "This campaign is to empower people with Sickle Cell Anemia and other [sufferers] of pain, and support our organization to continue to spread sickle cell awareness across the nation." Help them fulfill their purpose, while giving back to the community yourself, for just $20. 

    4) "Sickle Cell Strong" Short-Sleeved Tee or "Warrior" Long-Sleeved Tee
    Hosting informational events and the cost of purchasing materials for those events can get overwhelming, especially for small operations. Give back by giving to The Crescent Cell, an organization that collects and shares stories of warriors, as well as hosts events that educate communities about sickle cell disease. 

    Have you contributed to one of the campaigns above? Tell us why in the comments below!

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  4. How Sickle Cell Warriors Can Show Their Support of the Affordable Care Act

    August 7, 2017 by Andrea

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    The floods of calls, e-mails, tweets, and postcards from citizens to their representatives once again saved the Affordable Care Act (ACA) from being repealed and replaced last month. This means that, for now, among other things, the law will still require insurance companies to cover Americans who have pre-existing conditions (such as sickle cell) with insurance plan rate options that are comparable to plans they'd offer to  those without pre-existing conditions. 

    However, the groundbreaking healthcare law isn't completely out of the woods yet -- 45 has vowed to let the ACA fail and has already made moves in attempt to encourage that, such as cutting back on ACA enrollment marketing and advertising, as well as ending funding that helped support enrollment fairs. And while, as the L.A. Times reports, Trump's administration cannot force the entire healthcare law into ruin immediately, they can "cause some amount of chaos in certain parts of the healthcare system." 

    So, what can you do? 

    To start, mark these dates on your calendar: November 1 and December 15. November 1 is the day the next enrollment period will begin, and December 15 is the date that same period will end. In the past, enrollment would typically last about four months; that has now been significantly reduced to just 45 days. Continuing -- and growing -- the number of ACA enrollments will send a clear message that the ACA is important to the healthcare of millions of Americans. 

    Also, keep up those calls, e-mails, and other forms of direct communication with your representatives -- especially if their voting record shows they're in support of abolishing the ACA. Have a personal story to share? Pen a letter or create a video to visually illustrate how the ACA has helped save your life or the life of a family member or friend. Attending town halls and rallies can also ensure your voice is heard.

    Tell us how the ACA has helped you in the comments below.

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  5. How Mathematics is Fueling Sickle Cell Research — and Potential New Treatments — Through Computer Models

    August 1, 2017 by Andrea

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    We all know how sickle cell works. When red blood cells (RBCs) are introduced into low oxygen conditions, those cells become misshapen -- the lack of oxygen causes the cells to attach to each other and form polymer fibers -- and clump together. Travel through the bloodstream can be difficult for these distorted cells, and therefore, they can become stuck in capillaries, causing quite the RBC traffic backup -- which can lead to painful episodes for the Warrior.

    But while we know what happens, do we really know exactly how it all goes down? That's the aim of a team of mathematicians at Brown University in Providence, Rhode Island. "The goal of our work is to model both how these sickle hemoglobin fibers form as well as the mechanical properties of those fibers," lead study author and Brown Ph.D student LuLu told Science Daily.

    To create computer models that accurately mimic how red blood cells arrange themselves into polymer fibers, ultimately deforming their shape, the researchers used mesoscopic adaptive resolution (MARS), Science Daily reports. This just means that after a certain amount of a part of a model has been completed, that section is automatically displayed at a low resolution, so as not to be too taxing on the computer system.

    So far, the Brown University team has been able to illustrate that the sickled shape isn't the only irregular formation that SCD can cause. "We are able to produce a polymerization profile for each of the cell types associated with the disease," the study's lead author George Karniadakis told Science Daily. "Now the goal is to use these models to look for ways of preventing the disease onset."

    For more information on this study and the computer models themselves, read the full article here.


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