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.
@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!
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.
In celebration of World Rare Disease Day, we're highlighting the contributions of the McCourty Twins: NFL stars who have dedicated themselves to the sickle cell cause.
For the fourth straight year, Jason and Devin McCourty partnered with Embrace Kids Foundation to host the annual Tackle Sickle Cell event on Saturday, February 20. Inspired by an aunt and uncle who live with SCD and their late father who carried the trait, Jason and Devin have committed themselves to helping raise awareness and funds for sickle cell warriors.
A two-fold event, the twins hosted a blood drive that Saturday morning and a casino-themed fundraiser that night. Their goal for the blood drive, which has seen an increase in donations every year, is to make people aware of the importance of having a diversified blood supply. As Jason McCourty told New Brunswick Today, “The biggest thing with us getting behind this blood drive, is trying to get a more diverse attendance... getting more minorities out giving blood. I think it’s huge and it helps a lot." Why is a diversified blood supply important? According to the American Red Cross, sickle cell affects close to 80,000 African Americans in the United States, all of which will need blood transfusions at some point. And while O negative is a type that can be matched with anyone, it is rare and therefore, not in huge supply. Having donors, especially those of African descent, will allow for a larger stockpile of blood types that specifically match African Americans.
During the evening casino-themed fundraiser, the twins were able to help raise $35,000! This money will go toward scholarships, medical financial assistance, and other social services for people living with SCD. To read more on this year's fundraiser, check out the original article from The Daily Targum here.
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.
We all know about St. Jude Children's Research Hospital's pediatric cancer program, but did you know that St. Jude also boasts one of the nation's largest sickle cell programs, too? According to its website, St. Jude has been researching SCD since the hospital's inception back in 1962 and continues to treat sickle cell warriors from birth to 18 years of age.
No child is ever turned away because of a family's limited finances, race, or religion and no family ever receives a bill from the hospital. However, running St. Jude daily takes $2 million and about 75% of that money comes from donations. What's more, St. Jude makes contributing easy and fun. In fact, you can even turn your upcoming Superbowl party into a fundraising opportunity by joining the Omega Psi Phi frat in their second year as national volunteer partner with St. Jude for the annual St. Jude Game Day. Give Back. Here's how:
1. Sign up to host a party. 2. Create a personal fundraising page and share on social media. 3. Invite friends and family to join. 4. Earn prizes for fundraising milestones!
Easy? Check. Fun? Check.
Will you -- or have you ever -- hosted a St. Jude Game Day. Give Back. party? Tell us about it in the comments below!
'Tis the season for giving -- and what better way to contribute to a cause that you're passionate about than by attending a holiday benefit concert thrown by T-Boz, the ultimate celebrity sickle cell activist? A warrior herself, T-Boz truly understands the needs of those living with SCD and plans to donate the money raised from ticket sales to the Sickle Cell Foundation Support Group.
The concert, "T-Boz Unplugged," will be held on Sunday, December 6 at the Avalon in Hollywood, California and will feature T-Boz (of course), Da Brat, SWV, Kat Graham, and Kiana Brown, and will be hosted by Zendaya. And don't worry if your budget won't allow for a cross-country flight: You can also purchase access to the live stream here as it gets closer to the event.
We've talked a lot about how to host your own fundraising event for sickle cell lately, but we know that not everyone who's down for the cause leads any official organizations or has the means and the manpower to plan a program. Purchasing tickets to this show is the perfect alternative.
Do you plan to get tickets? How else will you be raising money and/or awareness for sickle cell this season? Tell us in the comments below!
