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  1. 4 Fundraisers to Support In Preparation for Sickle Cell Awareness Month

    August 15, 2017 by Andrea



    [*NOTE: Each of these fundraisers is hosted on Booster.com (a division of Custom Ink), but all funds will go to the sickle cell group that is organizing the fundraiser. Also, in case you're wondering, the models seen in the mockups are Booster.com's default -- the site does not currently offer models of any other skin tone.]

    September is less than three weeks away, and that means National Sickle Cell Awareness Month is just around the bend. Since 1983, when September was first officially recognized as the month to promote sickle cell advocacy, organizations and individuals across the country have concentrated their efforts through various campaigns. 

    Some groups are getting a jump on their outreach this year by providing apparel for every warrior and supporter to wear next month as part of their own endeavors to educate their communities about this oft-forgotten disorder. Here are four fundraisers to support now -- you'll not only get some new threads that show your support for the cause, but you'll also be helping to fund sickle cell awareness and research projects. 

    1) "Diagnosis is Not Destiny" hoodie
    This benefits Supporting Our Sicklers (S.O.S.) Parent and Guardian Support Group, which "is committed to advocating for, serving, and providing Sickle Cell Disease education to parents and guardians of children with all types of Sickle Cell while supporting research for a cure and improving awareness in the Greater Houston and surrounding areas." Hoodies are only $35, but hurry -- there's just one day left to order. 

    2) "Proud Supporter For a Cure" tee
    This campaign only has 3 hours left (and sadly, no supporters -- yet). Back this nonprofit -- its "mission is to broaden public awareness about Sickle Cell Anemia Disease and the need for better health services" -- before time runs out. One tee is only $20. 

    3) "Hustle Over Pain" tee
    No Pain In the Playroom's goal? To travel to Alabama and speak about sickle cell awareness and advocacy. "This campaign is to empower people with Sickle Cell Anemia and other [sufferers] of pain, and support our organization to continue to spread sickle cell awareness across the nation." Help them fulfill their purpose, while giving back to the community yourself, for just $20. 

    4) "Sickle Cell Strong" Short-Sleeved Tee or "Warrior" Long-Sleeved Tee
    Hosting informational events and the cost of purchasing materials for those events can get overwhelming, especially for small operations. Give back by giving to The Crescent Cell, an organization that collects and shares stories of warriors, as well as hosts events that educate communities about sickle cell disease. 

    Have you contributed to one of the campaigns above? Tell us why in the comments below!

  2. 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.

  3. 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!

  4. Sickle Cell and Menstruation: How to Raise Awareness and Advocate for Better Care

    May 26, 2017 by Andrea
    Photo: pxhidalgo/istockphoto.com

    Photo: pxhidalgo/istockphoto.com

    Monthly periods can be painful enough for women and girls with completely normal red blood cells and hemoglobin levels. Throw sickle cell in the mix and typical cramps can become a full-blown crisis -- every single time. Research shows that menstruation can directly trigger a pain crisis in sickle cell warriors, and also confirms that this particular area of study is neglected. Much more exploration needs to be done in order to better care for female patients with SCD.

    A common issue when it comes to the realm of period talk in general is that it's forsaken, perpetuating an idea that periods are taboo and "dirty" and "bad." This negatively affects women overall, fueling lack of understanding, causing women and girls in some countries to have to stay home from school and work, and even here in the United States, it has resulted in a serious deficiency of research, and in turn care, for sickle cell warriors on their periods.

    To combat the stigma of this completely natural bodily process, WASH United created Menstrual Hygiene Day -- a global initiative to raise "awareness of the challenges women and girls worldwide face due to their menstruation and highlights solutions that address these challenges." First celebrated in 2014, MH Day occurs every year on May 28 (May is the fifth month and periods usually last five days, and a full cycle is typically 28 days). This provides the perfect opportunity for the sickle cell community to voice concerns and difficulties that are unique to them when it comes to that time of the month. Here's how to get involved:

    1) Download the MH Day 2017 campaign materials here.
    You'll find educational posters, fact sheets, emojis, and more -- in several languages!

    2) Share your story on social media.
    Not a sickle cell warrior? Help spread awareness through the stories of others like this one. Be sure to include the hashtag #sicklecell  with the hashtags #menstruationmatters, #mhday2017, and/or #menstravaganza in your posts.

    3) Host a seminar, local art exhibit, or other program to help educate the community specifically about how menstruation can affect sickle cell warriors.

  5. World Cord Blood Day Seeks to Raise Awareness for Sickle Cell and Other Life-Threatening Diseases

    April 10, 2017 by Andrea

    cord blood post

    A new awareness event that will benefit sickle cell disease, among others, is set for November 15, 2017. This event, the first-annual World Cord Blood Day, seeks to educate the public about how stem cells taken from blood in the umbilical cord is a non-controversial method of retrieving and using stem cells to treat dozens of diseases, including SCD.

    According to a recent press release from Save the Cord Foundation, the event's organizers, more than 35,000 cord blood transplants have been done all over the world since 1988 and have treated 80-plus life-threatening diseases -- sickle cell being one of them. Research relating to stem cell transplants of this kind show that the transplants work best when the cells come from a relative (although research relating to donor stem cells is pushing along and has worked in some cases). The thing is, saving cord blood is literally a once-in-a-lifetime opportunity, as it must be done at the time of birth. World Cord Blood Day will help make people aware of how important it can be to save and bank this resource. 

    "We are truly excited about this opportunity to expand cord blood education worldwide while providing a platform for discussion focused exclusively on this valuable medical resource," Charis Ober, Executive Director of Save the Cord Foundation, said in the press release.

    So far, partners for this premier event include the Cord Blood Association, Be the Match, the World Marrow Donor Association, the American Association of Blood Banks, and the Foundation for the Accreditation of Cellular Therapy. Participation in the very first World Cord Blood Day is easy: You can sign up to learn about events near you, attend the free virtual conference, and/or join in the discussion on social media using the hashtag #WCBD17.

    Another movement to help raise awareness about sickle cell treatment and other diseases? That's a definite win.

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

    March 23, 2017 by Andrea

    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. New Video Game Aims to Infuse Fun with Sickle Cell Awareness

    January 16, 2017 by Andrea
    Photo: Play for Change

    Photo: Play for Change

    At Chicago's DePaul University, there's a team of video game designers seeking to tackle more than the typical platform game. Led by Doris Carmen Rusch (founder and creative director of Play for Change), this crew - which is comprised of undergrads, grad students, and alumni -- has been developing a game called "Blood Myth" for the specific purpose of increasing sickle cell awareness.

    Reminiscent of "Dungeons & Dragons" with its folklore aspect, "Blood Myth" is being built in partnership with DePaul's athletic department. The game takes players into an imaginary world in which they must surmount obstacles on their quest toward the top of a magical mountain to discover the Blood Myth's truths.

    "'Blood Myth' aims to create empathy for people with sickle cell disease and remind people with sickle cell that however they may feel, they are not 'cursed," the game's website explains. "Play 4 Change aims to use 'Blood Myth' to increase adherence to crisis-prevention methods, self-care, and promotion of a life-affirming, hopeful perspective to those with sickle cell."

    Just yesterday (Jan. 8), Play for Change hosted a playtest for the new game, and according to recent Twitter updates, players enjoyed the storyline and the gameplay.

    For more updates on the game and when it will be released, follow Doris Carmen Rusch on Twitter and follow Play for Change on Facebook.

  8. Trim Your Tree in Support of Sickle Cell Awareness

    November 29, 2016 by Andrea

    The holiday season kick-off is official: Thanksgiving is over, Black Friday weekend was just in full effect, and holiday music and movies dominate the radio waves and TV channels. What better way to celebrate the season than by trimming your tree in support of sickle cell awareness? Besides using basic red and white lights with solid red and white ornaments, make it clear that your decor is for a cause by snagging a few of these:

    1) I Am A Survivor Ornament, $11, cafepress.com


    2) Sickle Cell Support Circle Ornament, $10, inspiredsilver.com


    3) Hope, Love, Faith Ornament, $24, zazzle.com 


    4) Throwback Song of Peace Ornament, $24, ornaments4less.com 


    5) Unity, Strength, Hope SCDAA Ornament, $3, scdaa-e-store.myshopify.com 


  9. 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.

  10. 4 Ways to Prepare for Sickle Cell Awareness Month

    August 29, 2016 by Andrea
    Photo: stocksnap.io

    Photo: stocksnap.io

    It's about that time again: September, just two days from now, is Sickle Cell Awareness Month. While we, along with a host of others, are committed to raising awareness 365 days of the year, Sickle Cell Awareness Month is a much-needed opportunity to heighten awareness among the general public and raise funds for ongoing research.

    Get involved this month -- and beyond -- with these ideas:

    Make an effort to seek out information and resources relating to sickle cell. You can start here, with Xickle's blog. Other options include, the Sickle Cell Disease Association of America (SCDAA), the CDC, and the American Sickle Cell Anemia Association (ASCAA).

    If you're able, contribute money to official programs that fund research initiatives in the study of SCD. In the United States, you can donate to the SCDAA, the ASCAA, the William E. Proudford Sickle Cell Fund, among others. In the U.K., the Sickle Cell Society is one organization that accepts donations. Check for the appropriate place to send donations where you live. Money isn't the only thing you can donate. Time and blood are also very necessary. Volunteer with local sickle cell outreach projects; or, give blood at the American Red Cross -- and be sure to designate your donation to a sickle cell warrior.

    Once you've increased your own knowledge about sickle cell, don't keep it all to yourself. Share it with family and friends, post links to educational articles on social media, or partner with local churches, schools, and businesses to hold seminars and teach others in your community.

    If you're a sickle cell warrior yourself, you'll be able to help another learn coping skills and generally be an excellent support system. Since you'll understand what your mentee is going through, you can share stories of your own journey and how you've made it this far. Even if you don't have sickle cell, you can still mentor someone. If your mentee is a warrior, consider helping him or her plan for the future -- give assistance on college and scholarship applications, help with homework, or just take him or her on fun outings. Or, advise your mentee (warrior or not) on the various ways they can get involved in community advocacy.

    Got any more ideas on raising awareness in September? Share them in the comments below!

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