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  1. 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.


  2. Taking Sickle Cell Awareness to the Airwaves

    April 18, 2018 by Andrea

    airwaves

    Along with blog posts, social media chats, and rockin' our red in support, traditional media such as television and radio can help sickle cell awareness efforts reach an even wider audience, an audience that may not know the truths about SCD. Here are three examples of sickle cell awareness hitting the airwaves in the past week: 

    1. BET's "The Rundown with Robin Thede"
    On Thursday, April 12, this BET late night show aired a segment called "Pain and Prejudice." Interspersing light humor (it's a comedy show, after all) with facts, the segment addressed how doctors often don't take the pain Black patients are experiencing seriously, and they used the experience of sickle cell warrior Cassandra Trimnell (who's also the executive director of Sickle Cell 101) to explain this bias. "I don't know any other patient populations that have as much of a struggle getting pain medication as sickle cell patients, and a lot of people suspect it's because it's labeled as a 'Black disease,'" she said on the show. Watch the segment below: 





    2. Britain's Got Talent
    Over the weekend, the B-Positive choir auditioned for Britan's Got Talent, giving them a huge platform to discuss sickle cell disease. The choir, which received yeses across the board, is the official choir of NHS Blood and Transplant and is made up of members who have sickle cell themselves or have family members or friends who do. "The NHS Blood and Transplant wants to get the message [out that] everybody give blood. That's what we're about," the choir director told BGT's judges. Watch their performance below: 




    3. The Tom Joyner Morning Show
    Today, April 18, TJMS tackled sickle cell and the importance of African-American bone marrow donors for it's #GetWellWednesday segment. Specifically, they spoke with 8-year-old Darian Smith and his family. Darian needs a bone marrow transplant to live a healthier life. Read more about his story here.


  3. T-Boz Does Not Hold Back on Her Call for Us All to Get Involved in Sickle Cell Awareness

    July 3, 2017 by Andrea
    Photo: Instagram/@therealtboz

    Photo: Instagram/@therealtboz



    After Prodigy's passing late last month, celebrities and fans alike flocked to social media to express condolences and shock at the news. Many people even inquired as to what sickle cell was and how someone got it -- another clear sign that this disease does not even come close to getting the attention and research support it needs.

    One celeb, though -- T-Boz of the R&B girl group TLC -- sent off a series of tweets that were perhaps the most impactful, as they came from a place of true understanding and passion for awareness. A sickle cell warrior herself, T-Boz has had a few near-death experiences, which she shares in her upcoming book, "A Sick Life" (out in September, which is also Sickle Cell Awareness Month). Never one to keep quiet on the issue, T-Boz hosts annual fundraisers for sickle cell, speaks on it regularly in interviews, and writes about it in her books and poetry.

    In the following tweets, she calls out the SCDAA for not doing enough and calls on the Black Lives Matter movement to do more in regard to sickle cell awareness. Read what she has to say, heed the call, and get involved in any way you can.


  4. World Sickle Cell Day and Beyond: Creative Ways to Raise Awareness

    June 19, 2017 by Andrea
    Photo: CreateHER Stock

    Photo: CreateHER Stock



    World Sickle Cell Day (and also Juneteenth) is here again, and like every year, people come up with various ways of celebrating and raising awareness. Some wear red, some host workshops, and most get active on social media -- sharing how they've chosen to observe the day. See below for a few of our favorite out-of-the-box ideas:

    A Sweet Salute
    They say the way to a person's heart is through their stomach. That's why some warriors and supporters have chosen to educate their communities via baked goodies like these. Like this idea? Check out other options here and here.



    Sickle Cell Series
    As a journalist and filmmaker, Wana Udobang helps raise awareness through the stories she tells. For World Sickle Cell Day, she's created a series called "Warriors," which features four video interviews of people living with SCD. Watch the first video below.



    Inspiring Images
    Across the pond in London at the University College Hospital MacMillan Cancer Centre, "Seeing Red" -- an exhibition of photos taken by sickle cell warriors -- debuts today. According to UCLH, the photography is the culmination of the work the warriors did during narrative therapy pilot workshops.



    Have you seen any other creative ways to spread the word about sickle cell? Share them in the comments below!


  5. Fundraising Trends to Watch for and Implement in 2017

    March 28, 2017 by Andrea

    mobile fundraising for sickle cell

    If there's one constant in this world, it's change -- and that includes your fundraising methods. Throughout each year, you and your team need to reevaluate your sickle cell awareness goals and how much money is needed to achieve them. Of course, you'll always have that group of loyal donors who are down for your cause, but solely relying on them and not appealing to new supporters is a fast way to stagnation.

    This year, expanding your group of givers will require you to embrace mobile technology. Implement the fundraising trends below and see your troupe of donors diversify and grow.

    1) Stay Social
    Most people access social media -- think Twitter, Instagram, and Facebook -- on their mobile devices, so the updates you share on these platforms should be mobile-friendly. Encouraging them to click through to your website? Make sure your site is optimized for mobile. Downloading those social media apps to your phone is also imperative. You want to be able to respond to potential fundraising supporters quickly and efficiently, and if you're out and about and not near your computer, doing that will be difficult. To really ensure your messages are seen even if you don't have a large following yet, purchase social media ads that show well on computers and mobile devices.

    2) Crowd Source
    Once you've begun to establish a solid social media presence, take that another step forward and do some fundraising through online channels. Not only does this help save money you would have spent on a venue, promotional materials, entertainment, catering, and other incidentals, it will also help you reach a new demographic of prospective supporters -- people who may not want to or have time to attend an event, but would still like to give toward sickle cell research and awareness. Our top three favorite mobile-friendly crowdsourcing platforms? Booster, Pear, and GoFundMe.

    3) Recurring Donations
    If gyms, magazines, and Netflix can do it, so can you -- it's called an automatic renewal. Much more efficient than chasing down past contributors for another round of giving, only to have more than half of them not respond, recurring donations are the best way to ensure money stays coming in on a regular basis. Begin by setting up a recurring donation program (that donors can opt out of at any time) on your website -- using PayPal is a quick, mobile-friendly, and easy way to get started. To keep things simple, make the fundraising recurrences monthly. That way, as soon as someone signs up to donate a certain amount, that same amount will automatically be deducted from their accounts and sent to you each month.

    Have you tried any of these fundraising trends? Tell us how it went in the comments below!


  6. How to Keep Your Sickle Cell Awareness Team Motivated with a Retreat

    March 23, 2017 by Andrea
    retreat

    Photo: Stocksnap.io



    From fundraising to marketing to speaking engagements, and more, you and your team do a lot to raise awareness for sickle cell disease. And while you encourage other warriors and their friends and family to manage stress effectively, you don't always take that same advice. It's imperative, though, that you and your team rest up, too, so you can successfully maintain the momentum of spreading the word about SCD. A team retreat is one of the best ways to do this. Here's how:

    1) Ask your team for input.
    Where would they like to go? What kinds of activities are they interested in? How long should the retreat last? Are there any areas that should be avoided due to medical reasons? (For example, it would be a good idea to avoid places with extreme temperatures for any warriors on staff.) Giving your crew a chance to offer feedback on retreat plans will ensure that they feel a part of the preparation, giving them the sense that this is their event, too. When people feel included, they are more likely to attend and enjoy the fruits of their labor.

    2) Choose a theme.
    Remember, a retreat should be a relaxing respite from the typical daily grind. Think about a theme that embodies this idea, and create an agenda packed with activities that support this, as well. For inspiration on things to do, check out this post from JustWorks.

    3) Stick to a budget.
    Team getaways can be expensive, but they don't necessarily have to be -- and all of the expense doesn't have to fall on your company, either. Start by selecting venues that you can financially afford, such as those you find on Airbnb, rather than traditional hotel spaces. To help offset other costs for things such as travel, food, guest speakers, and spa services, find sponsors to provide funds.

    Have you ever hosted a team retreat? How did it go? Tell us in the comments below!


  7. The Major Advancement in Sickle Cell Treatment That Has Everyone Talking

    November 18, 2016 by Andrea
    Photo: Public Domain

    Photo: Public Domain



    Over the past week, there have been some exciting developments toward the treatment of sickle cell. One has to do with Xickle's very own journey from supplement status to pharmaceutical drug status (more on this in the coming weeks). Another has to do with the developments in gene editing from scientists at Standford University School of Medicine. 

    At Stanford, those scientists have successfully used the gene-editing tool, CRISPR, on the very gene that causes sickle cell -- mending it in stem cells taken from sickle cell warriors. The study, which was published last week in Nature, discusses how Dr. Natthew Porteus and his team repaired the gene mutation in 30 to 50 percent of cells with SCD. Then, those cells were injected into mice, and according to Reuters, those same cells were still functioning properly 16 weeks later.

    "What we've finally shown is that we can do it," said Porteus in ScienceDaily. "It's not just on the chalkboard. We can take stem cells from a patient and correct the mutation and show that those stem cells turn into red blood cells that no longer make sickled hemoglobin."

    The next step? Human clinical trials. Right now, the plan is to begin those trials in 2018. This is definitely a historic advancement in the treatment of SCD, and we're excited to see where it leads.

    For more information on the study and the process planned for human clinical trials, read the entire articles below:

    1) ScienceDaily: "Step toward gene therapy for sickle cell disease"
    2) Reuters: "Stanford uses CRISPR to correct sickle cell, human trials planned"
    3) TheScientist: "More Success Fixing Sickle Cell Gene with CRISPR"


  8. 5 Social Media Tools to Turn Your Sickle Cell Awareness Month Campaigns Up a Notch

    September 7, 2016 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    As an advocate for sickle cell awareness, you already know the importance of being on social media. But, sending out a random tweet, Facebook, Instagram, or Snapchat post every now and then isn't going to help grow your follower count, and thus, spread your message. To help you determine the best tools for your chosen platform, we've rounded up a few of our favorites below:

    1) Buffer
    This easy-to-use website allows you to schedule posts on Twitter, Instagram, and Facebook in advance, freeing you up to actually interact with your followers, as well as devote more time to researching current news about sickle cell research. Buffer also provides analytics, so that you can easily see what types of posts perform the best.

    2) Later
    Formerly known as Latergramme, this website and phone app also lets you schedule posts ahead of time -- but only for Instagram. If you're mode of raising awareness centers primarily on visual content, this is a must-have.

    3) Mention
    Sure, you could continue to search Twitter, Instagram, and Facebook for mentions of your name/nonprofit/company, but Mention makes this process so much easier. Simply sign-up and this tool will begin monitoring your name and will send you an e-mail round-up of online mentions each day. Knowing what others are saying about you -- good or bad -- gives you a chance to respond, and if necessary, rethink your messaging.

    4) Buzzsumo
    With this tool, you can set up alerts to keep you aware and up-to-date on the latest SCD news. You can then share this news with your audience, furthering more awareness. News can come in the form of infographics, articles, videos, and more.

    5) Quotes Cover
    Ever wonder how other people create those gorgeous quote pictures? Well, now you, too, can transform your favorite motivational quotes (perfect for #MondayMotivation), into beautiful, shareable content. If you're looking for easy ways to also edit photos and create collages, check out PicMonkey and Canva.

    Now that you're armed with these new tools, you can really take your sickle cell awareness to the next level.


  9. Raise Sickle Cell Awareness by Launching Your Own Podcast

    August 23, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io



    There are podcasts for just about everything -- entrepreneurship, murder mysteries, financial planning, politics, we could go on and on. And although these web-based radio shows hit the scene more than 10 years ago and have surged in popularity, it's still difficult to find any that center around sickle cell. In fact, we were only able to find two: Axis Advocacy and WDC Radio (the latter of which, Xickle sponsored at one point). There were other clinical and general podcasts that had addressed the topic before, but no others with the sole mission of raising awareness of SCD. 

    For a disease that directly affects about 100,000 people in the U.S., alone, there definitely needs to be more attention on it in this space. If you've been considering new ways of spreading the word about SCD, starting a podcast may just be the way to go. Here's how you can get started:

    1. Choose Your Format
    Will you stick with interviews each episode? Will there be more than one host? How long will each episode last, and how often will you upload new ones? Create a plan for your podcast and keep these questions in mind. You may also want to create an editorial calendar for the first few episodes to get the ideas flowing.

    2. Build Your Brand
    As with any product -- tangible or otherwise -- you'll need to develop a brand presence. First, determine what you'll name your show, and once you've done that, create a logo for it (or have a talented friend create one for you). The next step would be to write up an accompanying description for your podcast to make it easier for people to find it.

    3. Gather Your Goods
    To record a professional-sounding podcast, you'll need to upgrade that standard mic that's built in to your computer, and opt for one that will produce high-quality audio. You'll also need to invest in headphones, as well as production software. Production software helps not only with recording the episodes, but also with editing them into their final product.

    Once your first (and subsequent) episode is in the metaphorical can, be sure to add it to directories, such as iTunes, YouTube, and SoundCloud. Then, promote the mess out of it on social media to start building your audience.

    Why not start today?

    For a complete guide to launching and growing your podcast, check out Shopify's step-by-step handbook, here.


  10. Recent News Every Sickle Cell Warrior and Supporter Should Read

    July 13, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io



    Independence Day was last week, but for sickle cell warriors, freedom from the pain of chronic disease is still elusive. There have been many times since the initial discovery of SCD when researchers were close to a turning point that could have potentially led to a cure; however, lack of funding and not enough clinical trial participants, among other obstacles, have hindered progress.

    It doesn't have to be that way, though. Here are some of our favorite recent reads that shine a light on sickle cell and how we can all help push past stagnancy and toward advancement:

    1) The Startling Failure to Cure Sickle Cell Disease

    2) How Black Communities Could Better Help Sickle Cell Patients

    3) World Sickle Cell Day: Black Participation in Clinical Trials Impact Search for Cure

    4)  VCU Student Spreads Blood Donation Education to Benefit Sickle Cell Patients

    P.S. Xickle has been conducting its own clinical trial for the past year -- results coming soon, so be sure to check back here regularly!


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