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  1. Your Help is Needed to Ensure the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2018 is Signed Into Law

    July 31, 2018 by Andrea

    committee


    Every year, the Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act must be renewed, and on July 25, 2018, the U.S. Senate Committee on Health, Education, Labor, and Pensions (HELP) approved bill S. 2465 to go to the full Senate for consideration and approval. 

    Sponsored by Reps. Cory Booker and Tim Scott, this companion bill to HR 2410 will allow the Department of Health and Human Services to study SCD (and other genetic blood disorders) and gain a more accurate picture of how many people are truly affected. According to a press release from the Senate HELP committee, we know about 100,000 Americans are sickle cell warriors. However, there may actually be more -- there's not yet enough data to know. In addition to collecting more of this data, the bill will also encourage the development and implementation of more treatments to help patients with these disorders live healthier lives. 

    Before this bill can become law, though, it must be passed by the Senate, the house, and then, signed into law by the president. To help ensure all these milestones are successful, it's imperative to contact your senators repeatedly. Click here to find out who your reps are, and then, call them, e-mail them, tweet them -- let them know you will hold them accountable.

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  2. Music Therapy Pilot Study Gives More Evidence to Music’s Pain-Relieving Abilities

    July 24, 2018 by Andrea

    music therapy


    There's been clinically based evidence of music therapy benefiting sickle cell warriors for a little while now, but just recently, a pilot study on the subject went a bit further, showing that even just one session can help lessen a patient's pain and boost their mood. 

    Specifically, this study, which was published in the summer 2018 issue of the Journal of Music Therapy, focused on the implementation of electronic music improvisation as a pain reliever in adult SCD warriors. To get started, the researchers randomly divided 60 participants into one of three types of music therapy sessions: electronic music improvisation with a music therapist, recorded music listening, or no music therapy at all. One of these three methods was added to the patients' regular treatment regimens. 

    The results showed that option one -- electronic music improvisation with a music therapist -- significantly improved a patient's pain intensity and mood, also implying that the presence of a music therapist was key.  As reported by Sickle Cell Anemia News, one of the study's authors, Dr. Jane Little, director of the Adult SCD Clinc at UH Seidman Cancer Center, had this to say about their findings: "We are very enthusiastic about music therapy, and its promise for improving the lives of people who have sickle cell disease.  "Our results support the value that music therapists contribute to our patients' overall pain management and experience of care." 

    Tweet us @XickleRBC to let us know how music therapy has helped you or a warrior you know.


  3. Phi Beta Sigma and the SCDAA Have Partnered to Raise Awareness and Funds for Sickle Cell Disease

    July 17, 2018 by Andrea
    Phi Beta Sigma

    Photo for illustrative purposes only



    A couple of months ago, The Links Foundation, Inc. donated $1 million specifically for sickle cell research to St. Jude Children's Research Hospital. And just 10 days ago, another prominent Black nonprofit -- this time a Greek organization -- announced its partnership with the Sickle Cell Disease Association of America. 

    The members of Phi Beta Sigma Fraternity, Inc. see themselves as "a brotherhood of conscious men actively serving our communities," and as part of that this year, they'll be working alongside the SCDAA to help raise awareness of sickle cell disease and its trait and help raise funds for related research. 

    Their first official act will be joining in on the SCDAA's 5th Annual National Sickle Cell Walk with the Stars & Move-a-Thon on August 18, 2018 at Baltimore's Canton Waterfont Park. After that, Phi Beta Sigma will continue its partnership by helping organize bone marrow and blood drives, as well as educating their communities and assisting with fundraising. 

    "Phi Beta Sigma understands the deep impact that sickle cell disease has on our communities," the frat's international president Michael Cristal said in a press release on sicklecelldisease.org. "We are excited to lend our efforts to raising funds for this important cause." 

    The Walk/Move-a-Thon is open to everyone, so if you live in the Baltimore area and you'd like to participate, sign up to do so here.

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  4. Opioids, Sickle Cell, and the Latest Win on the Issue

    July 10, 2018 by Andrea

    opioids

    Instead of improving over the years, the stigma associated with sickle cell warriors and pain medications has only gotten worse -- especially with the onset of this administration's focus on what they term the "opioid epidemic." Warriors are often dismissed as addicts and told their pain can't possibly be as bad as they say it is. 

    Recently, though, one Virginia man scored a win for the thousands of people living with sickle cell in his state. Yesterday (July 8, 2018), the Richmond Free Press reported that on June 15, Virginia's governor, Ralph S. Northam, approved a regulation change allowing doctors to prescribe sickle cell patients higher dosages of opioids without having to provide justification for such prescriptions. This change, which was campaigned for by George H. Carter, a Virginian who lives with SCD and is chief lobbyist for the nonprofit Sickle Cell – Virginia, has been a long time coming. 

    According to the paper, Carter took his fight to the General Assembly and the Virginia Legistlative Black Caucus first, but neither would help him. Finally, he approached the state Board of Medicine, and this past February, they voted 12-6 to add sickle cell to the list of opioid regulation exemptions. 

    "If you haven't experienced the pain, you just cannot imagine what it is like," Carter told the Free Press. 

    Read the entire article here.

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  5. 5 Summer Reads for When It’s Too Hot to Actually be at the Beach

    July 3, 2018 by Andrea

    Even when the weather makes it too unbearable -- and too much of a crisis risk -- to bask in a chair seaside, you can still enjoy all the latest beach reads from the comfort of your air conditioning. Put your meditation app on calming beach waves, and settle in with a mocktail and one of these page-turners: 

    1) Children of Blood and Bone by Tomi Adeyemi, Barnes & Noble ($12.19)
    If you love all things Octavia Butler, you've got to grab your copy of Tomi Adeyemi's debut novel. It follows the character Zélie Adebola, as she seeks to avenge the death of her mother and restore magic to her homeland.

    Photo courtesy of publisher

    Photo courtesy of publisher


    2) Then She Was Gone by Lisa Jewell, Barnes & Noble ($19.45)
    This one goes out to all the mystery/thriller lovers out there. A tale of a mother's search for her long-missing daughter, this plot-twisty novel is a must-have for your summer reads list.

    Photo courtesy of publisher

    Photo courtesy of publisher


    3) An American Marriage by Tayari Jones, Books-A-Million ($17.24)
    Of course, no summer reads list is quite complete without at least one Oprah's Book Club pick. And in this one, two newlyweds have their lives changed in an instant when one of them is sent to prison for a crime he didn't commit. He returns home five years later, but can he and his wife really just pick up where they left off?

    Photo courtesy of publisher

    Photo courtesy of publisher


    4) Well, That Escalated Quickly by Franchesca Ramsey, Target ($22.90)
    A self-proclaimed "accidental activist," Franchesca uses humor to discuss everything from race to gender to social justice to identity and everything in between.

    Photo courtesy of publisher

    Photo courtesy of publisher


    5) The Woman In Cabin 10 by Ruth Ware, Barnes & Noble ($9.89)
    Lo thought a dream assignment aboard a luxury cruise ship would be just what she needed to level up at the travel magazine where she works. But when a woman on board goes missing -- and all that surrounds her is water -- Lo's dream quickly turns into a nightmare.

    Photo courtesy of publisher

    Photo courtesy of publisher

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