The March for Science -- which saw protesters all over the world stand up against the Trump administration's "alternative facts"-driven outlook on the discipline -- took place on Earth Day (Saturday, April 22, 2017). And while the majority of the march's focus seemed to center on climate change, the Flint water crisis, and wildlife protection, scientific research of all kinds is championed by the marchers, supporters, and activists.
That includes research and advancements for sickle cell disease.
This new week post-march is one of continued action and provides the perfect opportunity to further awareness of SCD, starting with today (Monday, April 24), in which the theme is "Science Discovers." The march's website provides various ideas on how to participate in this first day of action: promote science outreach, plan a science game night, and get others involved. Building upon the March for Science's suggestions, we've got a few thoughts on how you can tailor your first day of action -- and the rest of the week's -- to be sickle cell-specific:
1. Plan an informal teach-in (or series of teach-ins) at a local school, church, or community organization to be held in the near future. Partner with a nearby chapter of the SCDAA or other similar group to bring in experts and speakers.
2. Suggest that your book club choose a sickle cell-themed book for your next selection, and come to the meeting ready to discuss what you've all learned, and brainstorm ways you can support the community.
3. Create your own SCD-themed card game or board game with family and friends. Then, host a game night to actually play your newest masterpiece. It's a fun way to educate yourself and others you know about sickle cell. Check out this list of science-related games for inspiration on developing your own.
As you work on those ideas and begin the planning process, keep the other days of action in mind, too, and implement more activities and programs so that your year is full of activism and awareness.
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!
Nigeria has the largest population of sickle cell warriors in the whole world. In fact, more than 150,000 babies are born with sickle cell each year. One of those adult warriors is working to increase awareness of SCD in her native country through her start-up, Toyo Medical Techs, which supplies health-related products that help treat, diagnose, and evaluate conditions like sickle cell disease.
In an interview with She Leads Africa, Toyo Medical Tech's founder, Toyosi Ogunemeka, discussed her journey toward entrepreneurship, the toll it sometimes takes on her, and how she pushes through. "Every business, especially at the start-up stage is very stressful and challenging. In my business, I have to do a lot of running around and drive long distances," she told SLA. "There are days I feel overwhelmed and break down; there are also days I get comments like, 'I love what you do; keep it up' and that just makes my day."
Armed with a graduate degree in biomedical engineering and inspired by her own regular hospital stays, Toyosi was motivated to improve the conditions she, herself, had experienced in the health care system of her home country. Her goal? To bolster Nigeria's healthcare technology, and get it on par with that of foreign countries, which already have such tech in place.
Besides running her main business, Toyosi also manages a sickle cell awareness profile on Instagram, called The Warrior Story NG. Described as a nonprofit e-community, Toyosi's Instagram profile features a weekly series called, #AskTheDoctorFriday, in which the guest doctor of the day discusses a certain medical issue and answers followers' questions in the comments section of the post. Other posts include conversations about medicines, support groups, and research advancements, just to name a few.
Read the original article here for even more insight into the strength and drive of this warrior-business leader.
By Eduardo Montes-Bradley [CC BY 1.0, via Wikimedia Commons]
As part of our ongoing Black History Month tradition, we highlight specific pioneers of SCD awareness. Today, we're reflecting on Julian Bond. We all know that Bond was an icon of the Civil Rights Movement, but did you also know about his contribution to helping fight sickle cell?
In the early years of his 20-year service to the Georgia state legislature -- a seat he had to fight for all the way to the Supreme Court -- Bond wrote and introduced a bill calling for a statewide sickle cell testing program, making Georgia one of just a handful of states that conducted such screenings at that time. The bill "would require the Georgia Dept. of Health and each county board and department of health to 'promulgate appropriate rules and regulations governing tests for sickle cell anemia or sickle cell trait,'" JET reported in its March 23, 1972 issue.
Since, at that time, sickle cell could not be determined at birth, the bill stated that testing would begin when a baby reached about 6 months old. Because the testing was mandatory and targeted African Americans, however, many people felt that it could be used to discriminate against Black people -- and that definitely did happen.
As a result, then-president, Richard Nixon, signed the National Sickle Cell Anemia Control Act, which forbade discrimination of people affected by sickle cell disease and/or sickle cell trait, made testing voluntary, expanded sickle cell awareness and research programs, and funded those programs with millions of dollars.
1) Florence Neal Cooper-Smith
A native of Virginia, Cooper-Smith first learned about the existence of SCD when she was just a child back in the early 1940s. While waiting for a doctor's appointment, she picked up a book and started reading. That book was all about sickle cell disease, and it ignited a passion within her to help those who lived with it. Since the '60s, Cooper-Smith has been working to raise awareness of sickle cell not only in her local communities, but also state-wide and nationwide. Known as the "mother of sickle cell in Virginia," Cooper-Smith is also the first Black woman to have a professorship named after her.
2) William Warrick Cardozo
Before Cooper-Smith stumbled upon that book in her doctor's office, Cardozo had already begun groundwork on sickle cell studies. Following his studies at Hampton University (then called Hampton Institute) and Ohio State University, Cardozo began a fellowship in Chicago where he began researching sickle cell and soon published the paper, "Immunologica Studies of Sickle Cell Anemia" in 1937. In it, he detailed his discoveries: sickle cell disease was inherited and it occurred largely in Black people, among other findings.
3) Charles Drew
The first-ever medical director of the American Red Cross, Drew developed improved methods of storing blood plasma, so that blood could be collected and saved ahead of time, making blood transfusions more efficient. He also led the charge to create America's first full-scale blood bank. His methods were fueled by his discoveries that blood could be dried and later restored to its original state when its use was needed.
Still looking for a cause to support this Giving Tuesday (Nov. 29)? Consider donating to a nonprofit that works to improve sickle cell awareness. Every little bit helps, so donate whatever you're able, and then, encourage your friends and family to do the same. Not sure where to start? Check out our round-up of sickle cell charities based at home and abroad:
1. Sickle Cell Disease Association of America: The SCDAA is committed to sickle cell research, education, patient services, community services, and giving support to global organizations that work toward SCD awareness. For more than 35 years, this nonprofit has partnered with government agencies, medical facilities, and others to increase funding and understanding of sickle cell. Make a tax-deductible donation here.
2. American Sickle Cell Anemia Association: The oldest sickle cell organization in the U.S. (going strong since 1971), ASCAA works to provide "quality and comprehensive services through diagnostic testing, evaluation, counseling and supportive services to individuals and families at risk for Sickle Cell Disease." Click here to donate.
3. Children's Sickle Cell Foundation, Inc.: As an organization specifically geared toward helping kids with sickle cell, CSCF's mission is to "provide social, educational, and economic support for children with sickle cell disease and their families." Not only do they focus on raising awareness for SCD, but for sickle cell trait, as well. Donate here.
4. Sickle Cell Society: Based in the UK, SCS uses its donations to fund patient care, research, and educational projects that benefit sickle cell warriors. Some of their project include providing vacations for children with SCD, publishing information literature, and hosting seminars about sickle cell awareness, among other activities. To make a donation, click here.
5. Sickle Cell Awareness Group of Ontario: Through initiatives such as community awareness and scholarship grants for students with sickle cell, SCAGO -- a Canadian nonprofit -- is dedicated to improving knowledge of SCD throughout Canada. Here's how you can donate.
Which of these organizations do you plan on supporting this Giving Tuesday? Do you have a favorite sickle cell nonprofit that's non included in this list? Add it in the comments below!
This time of year, when darkness falls, it's fun to gather around and share spooky rumors of nearby haunts. When it comes to sickle cell, though, spreading truth is a much better option.
Here are 5 sickle cell myths and the truths behind them. Arm yourselves with this knowledge, and educate your community to foster understanding and awareness.
1) Sickle cell is contagious. Possibly one of the biggest misconceptions out there, this statement is completely untrue. Sickle cell is genetic, so the only way a person can get it is if they inherit one sickle cell gene from each parent. People cannot contract it through blood transfusions, being near someone with it, or any other way other than genetics.
2) There is no cure for sickle cell. Technically, bone marrow transplantation can potentially cure SCD. However, according to the Mayo Clinic, it's quite difficult to find a donor who's a good match, and the risks of transplantation can be serious. Since donors are scarce and risks are high, treatment is focused on reducing pain and occurrences of crises. The good news, according to Children's Hospital at Vanderbilt, though is that because of major medical advancements in recent years, bone marrow transplants have become safer for children.
3) People with SCD cannot live long lives. This may have been true decades ago -- back in 1973, life expectancy was just 14 years -- but now, we are seeing warriors living well into old age. In 2014, for example, sickle cell warrior Richard Mitchell celebrated 70 years. Last year, a Nigerian woman named Asiata Onikoyi-Laguda celebrated her 90th birthday!
4) Only Black people can have sickle cell. In reality, since SCD affects the blood and all people have blood, anyone can inherit it (see myth #1). It is more common, though, in African Americans because of the gene's beginnings in Africa as a natural protection from malaria. SCD is also common in people from Central and South America, the Middle East, Asia, India, and the Mediterranean, reports the American Society of Hematology.
5). Sickle cell is the same for everyone. Actually, there are several different types of SCD, and some forms -- like sickle cell anemia -- are more severe than others.
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.
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:
2. BECOME A DONOR 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.
3. ADVOCATE FOR CHANGE 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.
4. BECOME A MENTOR 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!
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.
![By Eduardo Montes-Bradley [CC BY 1.0, via Wikimedia Commons]](https://www.xickle.com/wp-content/uploads/julianbond-1024x680.jpg)
