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  1. 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.


  2. These Sickle Cell Awareness Posters are Clever, Funny, and Just What the Movement Needs

    July 5, 2016 by Andrea

    Ever wonder what plugs and sockets and video game controllers and consoles have to do with sickle cell awareness? Well, wonder no more because OluwaLatte and crew have used those images -- and more -- in a campaign they created for World Sickle Cell Day.

    Incorporating clever illustrations with the simple question, "Is Your Love Compatible?" these artists have developed a new way of engaging people of all ages and getting them to seriously consider the importance of knowing their genotype. While specifically created for World Sickle Cell Day and for a Nigerian audience (each image states, "Nigeria accounts for the highest number of sickle cell births annually in the world."), it is clear that these images can be used for any SCD awareness campaign around the world.

    Perhaps, you could reach out to OluwaLatte and collaborate on your next sickle cell educational venture. For real, this is the kind of thing we need to see go viral.

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     

    Twitter | @OluwaLatte

    Twitter | @OluwaLatte

     



    Which illustration is your favorite? Tell us in the comments below!


  3. 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.


  4. 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!


  5. 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!


  6. 10 Instas You Should Follow for SCD Awareness and Fundraising Inspo

    March 30, 2016 by Andrea
    Photo: CreateHer Stock

    Photo: CreateHer Stock



    Last year, we published a popular round-up of the Twitter accounts every sickle cell warrior should follow, and now, we're bringing you a similar list of Instagram accounts dedicated to sickle cell awareness and education.

    Inspired by a recent tweet to us asking how people can turn what the McCourty Twins do into national awareness and fundraising, this list is the perfect start for gathering much of the inspiration you'll need to launch your campaigns. Of course, most events do not start nationally right out the gate, but begin on the local or regional level and grow from there. But who knows, maybe you'll end up pitching your newfound ideas to a national association that can help take your concepts to the next level a little bit sooner.

    @sicklecell101
    "Certified sickle cell educators | education + awareness"

    @sicklecellmatters
    "Connecting families, healthcare professionals, private and public entities worldwide to promote awareness and online funding campaigns for SCD."

    @ssscfoundation
    Samira Sanusi Sickle Cell Foundation based in Lagos, Nigeria

    @shawnstestimony
    "You will get awareness all day with us! A pinch of luv and a lil treasure on the side. U wanna learn how 2 advocate like no otha ... come join us!"

    @sicklecell.life
    "Sickle-cell anemia - facts Tips to live your life ... Motivation, Quotes, Treatment, Healthy food/drinks tips"

    @nazhitheebaker
    "12yrs Old Chef. Creator of Nazhi Thee Baker Angel Foundation Non-Profit Organization"

    @scdaa
    "Official Page of the National Sickle Cell Disease Association of America, Inc."

    @sicklecellstories
    "A place you can share your sickle cell experiences."

    @paincrisis
    "Sickle Cell Advocate. Breaking the silence one post at a time."

    @sicklecellfoundationng
    "Sickle Cell Foundation Nigeria. Bringing hope to the African Child." 

    Did we miss any of your favorite sickle cell warriors? Add their Twitter handles in the comments below!


  7. Meet the 12-Year-Old Chef Who Bakes Cakes for Sickle Cell Awareness

    March 21, 2016 by Andrea
    nazhi the baker

    Photo: Twitter



    When she was only 10 years old, sickle cell warrior Nazhi got the idea to try her hand at baking delicious sweets that would also be healthy. She'd recently seen her older sister, also a sickle cell warrior, suffer a massive stroke, which contributed to her passion for creating healthy foods.

    On her website, Nazhi talks about how her first recipe for peanut butter cookies was an immediate hit, spurring her to expand her repertoire of treats to cheesecakes and ultimately to pound cakes. Now 12, Nazhi bakes and sells her pound cakes -- in flavors such as traditional, lemon zest, caramel pecan, and chocolate ganache -- directly from her website.

    But baking is only a small part of her mission. Through her Nazhi Thee Baker Angel Foundation, she uses the funds raised from her cake sales, as well as from generous donors, to help raise awareness of SCD. She also uses the funds to create and deliver care packages she calls "TLC bags packed with tons of goodness" to other children living with sickle cell. Her plans are to eventually have her goodie bags distributed to every city that has pediatric hematology departments.

    Support the amazing efforts of Nazhi by ordering your cake here or by donating to her cause.


  8. The Black Panther Party and Its Dedication to Sickle Cell Awareness

    February 16, 2016 by Andrea
    Photo: Twitter

    Photo: Twitter

     

    A couple of weeks ago, we kicked off Black History Month by recognizing the contributions of several Black Americans to sickle cell disease. This week, we're continuing that recognition by highlighting the efforts of the Black Panther Party (BPP). This is especially significant given the fact that so many people still have strong misconceptions about the Party, misconceptions that came to light again recently after Beyoncé payed tribute to them (this year being the 50th year since they began) during her Superbowl performance.

    "Serve the people, body and soul" is actually what the Black Panther Party was all about. This motto was more than a mere tagline or hashtag-worthy saying to the group, though. It was actively practiced through initiatives, such as the free school breakfast program, the free ambulance service, model schools, and the establishment of the People's Free Medical Clinics in several cities across the country. One of the functions of these free clinics? To screen people for sickle cell disease and sickle cell trait, which they began doing in 1971.

    As discussed in the book, The Black Panther Party Reconsidered, "Panthers were at the forefront of an educational and medical campaign to eradicate sickle cell anemia ... In a front page article in The Black Panther, entitled "Black Genocide, Sickle Cell Anemia," the Party accused the United States government of refusing to conduct research to find a cure for sickle cell anemia." By the time 1973 rolled around, the federal government decided to get involved and began funding research into SCD. While this was a win for sickle cell overall, this move also unfortunately disrupted the Party's work. If it hadn't been for them, though, there's no telling how long it would have taken the government to begin work on SCD research.

    For more information on how the Black Panther's pushed for sickle cell awareness and research funding, check out the links below:

    The People's Fight Against Sickle Cell Anemia Begins
    A Huey P. Newton Story: Community Survival Programs
    The Black Panther Party: Service to the People Programs


  9. Celebrating Black History Month and Recognizing Those Dedicated to Sickle Cell Awareness

    February 1, 2016 by Andrea
    Photo: Screenshot/Vimeo

    Photo: Screenshot/Vimeo, Toyin Adesola



    As we celebrate the start of Black History Month and honor the contributions and struggles of those who've come before, we'd also like to recognize a few people who are making history today in regard to sickle cell awareness. A disease that disproportionately affects African Americans, it is paramount that we celebrate advancements and those people who help to make them a reality.

    1. Memphis Grizzlies Player, Mike Conley
    According to The Commerical Appeal, Orion Federal Credit Union donated $15,000 to the Methodist Healthcare Comprehensive Sickle Cell Center in Tennessee on Conley's behalf. A longtime advocate of sickle cell, Conley's passion for raising awareness of SCD stems from the fact that a few of his own family members are warriors, themselves.

    2. The Team at the University of Alabama at Birmingham's Adult Sickle Cell Clinic
    Last week, UAB also raised money -- $1 million, in fact -- to go toward its Adult Sickle Cell Clinic. Not an overnight success type situation, raising these funds took half a decade and a lot of perseverance. As reported by Alabama Newscenter, back in December of 2010, the North Central Alabama chapter of the Sickle Cell Disease Association of America pledged $1 million to the clinic. Over the course of the next five years, many fundraising events were held and a sickle cell awareness vehicle tag was created and sold until, finally, the full amount was collected and presented to the clinic this past December.

    3. Toyin Adesola
    A native Nigerian and sickle cell warrior for more than 40 years, Adesola refused to succumb to sickle cell and has made a name for herself as a speaker, advocate, and author. In a recent interview with Konnect Africa, Adesola credits her faith in God with helping to keep her going. She also launched a nonprofit called the Sickle Cell Advocacy and Management Initiative to help reduce the occurrence of SCD in Nigeria and to "empower and improve the lives of people with sickle cell anaemia disorider to live healthy, positive, and impactful lives by educating, creating awareness, and providing support through various channels." Her 2005 autobiography, "Still Standing", is also being made into a film. Check out the trailer here.

    Stay tuned throughout this month, as we recognize even more of those who contribute to the awareness and advocacy of SCD.


  10. 4 Ways to Reinvigorate Your Sickle Cell Awareness Campaign

    November 2, 2015 by Andrea
    These tips are the seeds you can plant to give new life to your awareness campaigns. (Photo: Kaboompics)

    These tips are the seeds you can plant to give new life to your awareness campaigns. (Photo: Kaboompics)



    Feeling like your SCD awareness methods have as much life as those Halloween ghosts? Put these four tips into play and breathe new energy into your movement:

    1. Ask past participants to share photos of themselves at your events. Then, repost those photos on social media and your blog. Just as positive reviews can help sell products, photos of people positively engaging in your fundraising and volunteer programs can inspire others to get involved with your organization, as well.

    2. Hold a Twitter Q&A. One reason for a drop off in activity may just be that not enough people are aware of what you're doing for the SCD community. Use social media to your advantage and set aside an hour or so once a week or once a month to answer questions people may have about your efforts. This will give you an opportunity to share information about upcoming events, any crowdsourcing campaigns you're running, and generally how people can join your team.

    3. Rethink your events. Looking to attract an increased number of young people to join with your other established volunteers? Host an event that may interest that set more, such as a benefit concert or a game night. What's more fun that dancing the night away or unleashing your competitive spirit around friends, while raising money for sickle cell all at the same time?

    4. Feel the love. Sometimes a lack of motivation can be the cause of your slump. It's not that you've completely lost your passion for raising awareness; you've just become a bit burned out. To combat this, start keeping a "love" folder in your e-mail, on your computer, or even in hard copy form. When that "meh" feeling starts creeping up, read all the positive feedback you've saved in your "love" folder and let that be the boost you need to step up your awareness efforts.

    Overcoming campaign fatigue is simple once you decide to break out of your usual routine and implement fresh ideas. Which of these tips will you/have you used? How else have you brought new life to a volunteer slow down? Tell us in the comments below!


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