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  1. There’s Finally a Podcast Dedicated to Sickle Cell

    June 26, 2018 by Andrea



    Two years ago, we discussed the lack of podcasts centered on sickle cell disease and wrote about how launching your very own is a great way to raise awareness of SCD all year long. A couple years later, and there's still a void on the this subject in this space. But, as of this past World Sickle Cell Day, one group set out to help change that. 

    Sickle Cell 101, a nonprofit organization that focuses on sickle cell education through social media, launched their podcast on June 19, 2018. Hosted by Cass and Stephen -- a sickle cell warrior and founder of Sickle Cell 101 and a pharmacist and sickle cell trait carrier, respectively -- the inaugural episode covers the current state of sickle cell across the globe and touches on topics, such as what sickle cell is and how it is inherited, how sickle cell warriors can best take care of themselves, the stigma associated with warriors and pain medications, the misconception some have that sickle cell is witchcraft, and more. 

    As an organization, Sickle Cell 101 also gives out annual Sickle Cell Advocates of the Year awards and hosts an HBCU sickle cell college tour. We're not sure how often new episodes of their podcast will air, but be sure to follow them on Twitter and Instagram for updates.

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  2. How to Raise Sickle Cell Awareness 365 by Starting a Book Club

    June 18, 2018 by Andrea

    book club

    Tomorrow is World Sickle Cell Day, but the only way to truly make an impact on SCD awareness is to make the efforts ongoing. We've shared a lot of ideas over the past few years about how to do just that, and in celebration of WSCD 2018, we're comin' at you with another one: Start your own book club. 

    But not just any book club. Fill your reading list with sickle cell-related fiction and nonfiction and your membership roster with warriors and non warriors. We've even compiled a few selection options to get you started. Once you've settled on those preliminaries, it's time to solicit input from founding members to decide how many people you'd like to have in your club and how often you all should meet. Will you gather monthly? Quarterly? Bi-monthly? Who will host each meeting and where? Will you rotate members' houses or meet in a public place? How will you determine what books to read next? 

    To kick things off, the book club's founder can select the first book; or, they can send a survey with a narrowed down list of choices to current members, and read the winning pick. Then, when it's time for the first meeting, that session's host/hostess can lead the group through spirited discussion, keeping the following topics in mind: 

    1) Overall thoughts on the book
    2) How effective the book was conveying its message
    3) Whether anyone learned anything new
    4) Themes/motifs, etc. 

    Picking up a book club journal will help with discussion, as well as provide a fun record of all the books you and your group read, making it easy for everyone to share recommendations with friends and family. 

    For more information about book clubs, check out the website for National Reading Group Month. The actual month is October, but this resource is available 365.

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  3. The FDA Wants to Hear from You. Here’s How to Make That Happen.

    June 12, 2018 by Andrea

    savannah-walters-504059

    Last month, the Food and Drug Administration (FDA) announced it would be holding a public meeting all about chronic pain, in hopes of learning, directly from people living with chronic pain, more about what patients go through and how treatment is given. As the date draws nearer -- the event will be held on July 9, 2018 from 10 a.m. to 4 p.m. at the FDA's White Oak Campus in Silver Spring, Maryland -- we wanted to encourage sickle cell warriors to make their voices heard, whether in person or via letter. 

    It's no secret that sickle cell warriors, a large number of whom are of African descent, face stigma and prejudices when it comes to securing the medications needed for their severe pain. Many times, doctors will make assumptions that the person seeking help is an addict and refuse to believe their pain is as intense as they say. Chart notes reflecting this can also potentially affect a person's future treatment, as well. While there have been studies published, articles written, and even TV shows dedicated to calling out such ill treatment of this specific group of people, the prejudices continue. The best way to help push the medical community toward necessary change as a whole is to speak out -- and never stop until that change is made. 

    According to the announcement, the "FDA is particularly interested in hearing from patients who experience chronic pain that is managed with analgesic medications such as opioids, acetaminophen, nonsteroidal anti-inflammatory drugs (NSAIDs), antidepressents; other medications; and non-pharmacologic interventions or therapies." If you can't make it to next month's meeting in person, the FDA wil be accepting written comments (e-mail or regular mail) about your experiences with chronic pain through September 10, 2018. You can find details on sending your submission here.

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  4. World Sickle Cell Day 2018 Awareness Campaigns You Can Start Now

    June 6, 2018 by Andrea

    world sickle cell day 2018

    June 19 is World Sickle Cell Day, but you don't have to wait until then to show your support and help raise awareness. Here are a few examples of what others are already doing leading up to World Sickle Cell Day 2018 to inspire you. 

    1. SHARE CREATIVE FUNDRAISING IDEAS
    It's a good idea to stick to one major fundraiser each year, but you can host mini ones once per quarter, so as not to wear out the donors you seek. Just in time for the approach of World Sickle Cell Day 2018, the Sickle Cell Society recently shared this Fundraising A-Z chart developed by LocalGiving.

     

    2. INVOLVE THE KIDS
    Kids are naturally curious and inventive, so use that as you begin teaching children who may not know what SCD is. Then, ask them to come up with fun ways to help spread the word and get their friends in on the action, too. A group of seventh graders recently came up with the idea to wear red tape. 

     

    3. JOIN THE COLOR CAMPAIGN
    Some have begun a campaign to encourage people to wear red and black for the entire month of June, rather than just one day, to help raise awareness of sickle cell. Join them by wearing your red and black, sharing your selfies, and urging others to do the same. 

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