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  1. How One Man Uses Art to Raise Awareness for Sickle Cell Disease

    May 23, 2016 by Andrea
    Photo: Patreon

    Photo: Patreon

    A self-proclaimed PAINter, Hertz Nazaire has been creating artwork depicting his experiences with sickle cell disease for years. One of his current projects? Collecting photos of warriors who've lost their battle, as well as photos of those who are still very much in the fight, so that he can make them into art and put them on display at his next show in September -- Sickle Cell Awareness Month. "I am a warrior [and] I struggle with the pain of sickle cell disease, so some of my art is created for the awareness of that struggle that is shared by many around the world," Nazaire says on his Patreon site

    In order for him to successfully carry out his mission -- for this project and others to come -- he not only needs photographic submissions, but also donations to help fund his work and its distribution. "It is frustrating when you want to give your heart to something, but you are held back by money. This drives a creative person to the point of madness," he writes. "So, this is the action I took as a result of my anger. I started this Patreon to ask for help to find patrons willing to support my voice and help me create my art."

    Maybe you've been looking for a way to help the sickle cell community, but don't feel that you are able to organize a fundraising event or lead an educational session on SCD itself. This could be your opportunity to give back. It's easy to do and Nazaire says that even a couple of bucks a month can help. Simply click here to donate.

    To submit photos for his current project, e-mail them to nazaire@gmail.com.

  2. TLC’s T-Boz Details Her Sickle Cell Journey in New Memoir

    May 17, 2016 by Andrea
    Photo: Instagram

    Photo: Instagram

    Tionne "T-Boz" Watkins of TLC fame has never been quiet about her sickle cell warrior status. She addressed it back in 1999 in her first book, a collection of poems entitled "Thoughts"; she's discussed it in numerous interviews over the years; she held a benefit concert last December; she's the national celebrity spokesperson for the Sickle Cell Disease Association of America; and now, she's prepping to pen a memoir that is set to be released in September of 2017 by Rodale Books.

    Called "A Sick Life," this memoir will delve deeper into the singer's sickle cell journey and how it has impacted every aspect of her life, from her singing career to her relationships to motherhood and everywhere in between. Told by doctors that she'd never live past 30 (she's now 46) and that she'd never have children (she has a 16-year-old daughter), among other things they claimed she'd never be able to do, T-Boz has surmounted every obstacle and then some.

    "I want to hopefully get stuff off my chest and inspire someone at the same time," she told People magazine in an exclusive interview last week. "There's a lot that people don't understand about sickle cell anemia. I want to really clear it up and hopefully give everyone a better understanding ... I haven't really talked about all the times I could have died, my ICU visits," she continued. "I was really a young girl who had a dream, who wanted to do something they told me I could never have."

    Click here to read the full article.

  3. How to Keep People Engaged and Excited at Your Next Sickle Cell Awareness Talk

    May 9, 2016 by Andrea
    Photo: Gratisography

    Photo: Gratisography

    According to a recent Microsoft study of Canadian media consumption and digital lifestyles, the average person's attention span has dropped from 12 seconds in the year 2000 to 8 seconds in 2013 -- apparently one second less than that of a goldfish. 

    If you're a sickle cell educator of some sort, this information is crucial to understanding your audiences and how best to keep them interested. Rather than sticking to a basic lecture and running the risk of people zoning out -- napping, playing on their cell phones, staring into space -- infuse a little TED Talk inspiration into your next presentation. These tips will help keep your group engaged and ready to spread awareness.

    1) Be Captivating. TED Talk speakers are known for maintaining the intrigue level with their audiences, be they in person or online. To do this, they focus on relatable storytelling to get their messages across.

    2) Keep it Short. While an 8-second speech is clearly impossible, you can definitely pare things down to a total of 20-30 minutes. People are more likely to stay tuned in to presentations that don't drag on; plus, if you've been given an hour of time with your group, you can use the second half for Q&A.

    3) Skip the Slides. Don't you just love it when a speaker puts up PowerPoint slides of literally every word her or she is saying? Didn't think so. So, don't do that to your audiences, either. If you must use slides, be sure they only contain bullet points of what you'll be touching on or images/infographics that help illustrate your points. 

    4) Embrace Technlogy. Your goal is to inform people about SCD and how they can help, so consider recording your talks and uploading them to YouTube. This way, you can promote your videos via social media and share your message and calls to action with the world.

    Do you have any other tips to add to this list? Drop them in the comments below!

  4. 12-Year-Old Sickle Cell Warrior Has Her Own Goals of Raising Awareness

    May 2, 2016 by Andrea
    Photo: YouTube/Screenshot

    Photo: YouTube/Screenshot

    Bringing much-needed attention of sickle cell disease to the masses isn't an "adults only" type gig. And 12-year-old Jaida Holley -- AKA Jay Simone the Decade Author -- proves that.

    A super-energetic spirit with three self-published books under her belt already, Jaida's next goal is to write a book about her own experiences living with SCD. In an interview with KWTX in her hometown of Killeen, Texas, Jaida said, "I know a lot of people don't understand [sickle cell] and I really just wanna spread the news ... and let people know that sickle cell is really real and it's painful." According to KWTX, Jaida would also like to start a support group for girls with sickle cell.

    Jaida got her start in writing just two years ago, when she wrote and published her first book -- a book of poems -- for Google's kid-preneur program called "Lemonade Day." Most recently, she got accepted to Duke University's summer studies program , where she hope to learn even more skills to help her achieve her goals. This young warrior is doing big things and we can't wait to see how it all unfolds!

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