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
Which illustration is your favorite? Tell us in the comments below!
Category: Sickle Cell Disease, Sickle Cell Education Tags: know your genotype, sickle cell awareness, sickle cell disease, world sickle cell day | Comments Off on These Sickle Cell Awareness Posters are Clever, Funny, and Just What the Movement Needs
June 22, 2016 by Andrea
Photo: Twitter
You may remember that during Black History Month, we wrote a post recognizing a few people who've dedicated their lives to raising awareness for sickle cell disease. One of those people was Toyin Adesola, a native Nigerian and sickle cell warrior. At the time of that first post, her 2005 autobiography, "Still Standing" was being made into a film. And yesterday, appropriately World Sickle Cell Day, the documentary premiered both online and offline.
An International Christian Film Festival nominee for Best Director, Most Creative, and Official Selection in the documentary category, as well as an Impact Awards Doc U.S. and International Film Festival, Indonesia winner, "Still Standing" tells of the struggles and accomplishments of Toyin, who was diagnosed with SCD when she was 6 years old. "Growing up, I had the regular pains. And those pains are not something you'd wish on your enemy. Sometimes, even morphine does not even hold that pain down," Toyin explains in the doc.
She shares that she dealt with depression and fear growing up, as well, but also says that she saw herself doing so much more than simply existing, surviving. She knew she wanted to make a difference and credits going back to school and renewing her faith as major turning points in her life. "I'm driven by God ... my faith in God, and that's why I'm still here. Secondly, just the passion to be able to do things, to achieve things. To know that, yes ... I've been able to give my all," she says in the film.
Watch the full documentary here (it's only 14 minutes and 30 seconds), and let Toyin tell you her story of strength and perseverance.
Category: Resources for Parents, Sickle Cell Disease, Sickle Cell Education Tags: sickle cell awareness, sickle cell disease, sickle cell documentary, Still Standing documentary, Toyin Adesola | Comments Off on “Still Standing” Documentary and its World Sickle Cell Day Premiere
June 14, 2016 by Andrea
Photo: CreateHer Stock
World Sickle Cell Day is Sunday, just six days away. Here are just a few examples of how warriors all over the world are planning to celebrate and raise awareness:
NIGERIA
Presented by the Sickle Cell Aid Foundation, several events will be held in various parts of the country. Examples of these events include free genotype testing and genetic counseling, visits to sickle cell warriors in hospitals, awareness walks, art exhibit, and more. Plus, there will be a companion social media campaign, so that others outside of Nigeria can also participate.
UNITED STATES
While there will be hundreds of events across the 50 states, we'll be highlighting one in Michigan for this post. Hosted by the Michigan Chapter of the SCDAA, "High 5 for Sickle Cell" will be a campaign focused on educating people about five facts and myths related to sickle cell disease. As the Michigan Chronical reports, the five items to be addressed are as follows: pain, lifespan, trait, treatment, and race.
CANADA
This year, the Sickle Cell Disease Association of Canada is taking action by setting up blood drives throughout the country. Click here to learn how to register yourself (along with your family and friends!) and find a clinic near you.
UK
It's all about a day of family fun to raise awareness for SCD in Wolverhampton. This third annual World Sickle Cell Day event, held at Hickman Park in Bilston, will include a host of games, refreshments, live music, raffle prizes, and more!
What events are going on near you? Leave the info in teh comments below for others to see and join!
Category: Fundraising, Sickle Cell Disease, Sickle Cell Education Tags: sickle cell awareness, world sickle cell day | Comments Off on How People Plan to Celebrate World Sickle Cell Day Around the World
May 23, 2016 by Andrea
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.
Category: Fundraising, Sickle Cell Disease, Sickle Cell Education Tags: Hertz Nazaire, patreon, sickle cell art, sickle cell awareness, sickle cell disease, sickle cell fundraising | Comments Off on How One Man Uses Art to Raise Awareness for Sickle Cell Disease
May 17, 2016 by Andrea
Photo: Instagram
Tionne "T-Boz" Watkins of TLC fame has never been quiet about her sickle cell warrior status. She addressed it back in 1999 in her first book, a collection of poems entitled "Thoughts"; she's discussed it in numerous interviews over the years; she held a benefit concert last December; she's the national celebrity spokesperson for the Sickle Cell Disease Association of America; and now, she's prepping to pen a memoir that is set to be released in September of 2017 by Rodale Books.
Called "A Sick Life," this memoir will delve deeper into the singer's sickle cell journey and how it has impacted every aspect of her life, from her singing career to her relationships to motherhood and everywhere in between. Told by doctors that she'd never live past 30 (she's now 46) and that she'd never have children (she has a 16-year-old daughter), among other things they claimed she'd never be able to do, T-Boz has surmounted every obstacle and then some.
"I want to hopefully get stuff off my chest and inspire someone at the same time," she told People magazine in an exclusive interview last week. "There's a lot that people don't understand about sickle cell anemia. I want to really clear it up and hopefully give everyone a better understanding ... I haven't really talked about all the times I could have died, my ICU visits," she continued. "I was really a young girl who had a dream, who wanted to do something they told me I could never have."
Click here to read the full article.
Category: Sickle Cell Disease, Sickle Cell Education Tags: A Sick Life, sickle cell, sickle cell awareness, T-Boz, T-Boz memoir, TLC | Comments Off on TLC’s T-Boz Details Her Sickle Cell Journey in New Memoir
March 21, 2016 by Andrea
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.
Category: Fundraising, Sickle Cell Disease, Sickle Cell Education Tags: fundraising, Nazhi the Baker, sickle cell awareness, sickle cell disease | Comments Off on Meet the 12-Year-Old Chef Who Bakes Cakes for Sickle Cell Awareness
February 1, 2016 by Andrea
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.
Category: Fundraising, Sickle Cell Disease, Sickle Cell Education Tags: black history month, Mike Conley, SCDAA, sickle cell awareness, sickle cell disease, Toyin Adesola | Comments Off on Celebrating Black History Month and Recognizing Those Dedicated to Sickle Cell Awareness
November 9, 2015 by Andrea
Photo: CreateHer Stock
1. Be Patient
It's easy to get frustrated with the fact that many people still don't know what sickle cell is, and even if they have heard of it, they may not exactly understand how it works. Take those times when people utter misinformed remarks or when they genuinely inquire about the disease as teachable moments, in which you can impart correct knowledge to them right on the spot.
2. Introduce Them to a Warrior.
Sometimes, the best way to educate the people in your area is to have them hear first-hand accounts about sickle cell disease directly from the warriors themselves. Connect with the Sickle Cell Disease Association of America or your local sickle cell advocacy organizations to obtain information on booking speakers at your next event.
3. Start a Facebook Group.
They're super easy to set up, and you can invite anyone to join. This is a great option for individuals and organizations to spread their message of sickle cell awareness to a large group of people at once. On the Facebook group's page, you can directly answer questions related to sickle cell disease, as well as share information about the latest advancements and breaking news.
4. Develop an App.
If you're tech savvy, consider building an educational app that teaches people all about what sickle cell is and how it affects the body. A mobile app game could be the perfect way to get people interested in learning more about SCD, especially children and adolescents.
Category: Resources for Parents, Sickle Cell Disease Tags: sickle cell advocacy, sickle cell awareness, sickle cell disease, sickle cell educational programs | Comments Off on 5 Easy Ways You Can Educate the Community About Sickle Cell
August 24, 2015 by Andrea
CC BY-NC-ND 2.0 via Neil Moralee
We're always scouring the web for innovative ways others choose to raise awareness for sickle cell, especially with the start of Sickle Cell Awareness Month a little more than a week away. Some things we've seen:
1. Booster campaigns selling T-shirts to raise money for sickle cell awareness.
2. Celebrity bowling challenges -- the K.I.S. Foundation is hosting it's 12 annual event next month.
3. Numerous sickle cell walks/runs like this one, hosted by the Greater Boston Sickle Cell Disease Association.
And recently, we ran across this article from the Fox affiliate in Birmingham, Alabama. More than 100 bikers gathered this weekend (August 22, 2015) to embark on a 40-mile ride to raise money for sickle cell warriors. The ultimate goal of these sickle cell supporters? A little something different: to create a sickle cell specialty license plate that will serve to also raise awareness and research funding for SCD.
Check out the full article: Bikers raise money for Sickle Cell research with 40-mile ride
Category: Resources for Parents, Sickle Cell Disease Tags: bikers ride for sickle cell awareness, sickle cell awareness, sickle cell awareness month | Comments Off on An Innovative Take on Raising Awareness for Sickle Cell
June 1, 2015 by Andrea
We all know that sickle cell disease is in desperate need of widespread awareness. As World Sickle Cell Day approaches, we wanted to take some time out to recognize the warriors and bring to light how many of them feel on a regular basis -- and what better way to do that than to hear from the warriors themselves through the power of social media?
When this is what you mean by "rollin' with your crew":
Instagram
When your sickle cell pain is past the point of those everyday pills:
Instagram
When people tell you that you don't look sick:
Instagram
When you feel a sickle cell crisis about to happen:
Instagram
When you realize it's the little things in life that make you happy:
Instagram
When the pain comes out of nowhere:
Instagram
And last, but not least, when you remember that you're a warrior and SCD messed with the wrong one:
Instagram
Category: Sickle Cell Disease Tags: SCD, sickle cell awareness, sickle cell disease, sickle cell problems, world sickle cell day | Comments Off on 7 Times Instagram Kept It Real About #SickleCellProblems
