Sickle Cell Moguls –
The Story Behind “Bold Lips for Sickle Cell Founders.”
Bold Lips for Sickle Cell
WRITTEN BY STACEY SOTTILE
BLFSC & SICKLE CELL
Bold Lips for Sickle Cell (BLFSC) is a non-profit 501c3 Organization spearheaded by Sickle Cell Warriors and founders Jewel Darborne and Shamonica Wiggins. Sickle Cell Warriors are people who live and survive every day with sickle cell disease (SCD).
BLFSC radiates an energy of youth. The words BOLD LIPS along with the colorful lip prints gives pizazz to what is one of the most recognizable anthems in sickle cell awareness.
It’s proclamation invites all kinds of ages, sexes, and genotypes to pucker up, smear on your fav shade of lip gloss, Fenty Beauty, Maybelline or Chapstick and “Speak up for Sickle Cell.”
Sickle cell is an awful genetic blood disease. It’s over 100 years old with no cure and only two FDA approved medications for treatment. There are too many pre-mature deaths, too much “pain filled,” days and sleepless nights.
To contrast the severity of SCD, the BLFSC mission states, “Sickle Cell has been treated as sort of an underdog of diseases, and our purpose is to educate others about sickle cell through bold and attention-gamering marketing and promotions.”
Dictionary.com defines the word (mogul) as “An important, powerful, or influential person.
Darbone and Wiggins started the BLFSC organization based on a challenge to come up with an idea for a social media campaign. Flash forward to 2017 the creative duo celebrated the companies 3rd year Anniversary with a number of notable conquests.
They succeeded in taking the challenge, and “It caught on like wildfire on all social media platforms which in turn caught the attention of celebrities causing it to go viral.” Explains Darbone.
The world of social media was never the same as so many people effected by the illness turned into their own empowered armies pledging the Bold Lips for Sickle Cell Mania created by these two Moguls.
The ladies are amazing. Each have been in the hospital themselves fighting for survival from a dagger called sickle cell disease that penetrates their bodies with no sympathy, and being that SCD is a blood disease all the bodies organs can become pierce with its pain.
Nevertheless, those are the days that the BLFSC Moguls have experienced and continue to do so if SCD remains incurable. When they are feeling well they defeat the odds as they travel to promote their cause. Their beauty, swag, and eloquent messages showcase sickle cell to be the invisible disease that it is known to be.
Between the two of them they have individually or collectively hold similar lifestyles, especially with dealing with fighting SCD. I asked them “…Mama Pooh was created to represent strong female warriors; What is your greatest triumph?”
“My greatest triumph would have to be being a mother to my 6 year old daughter Roree. I spent a whole month in the hospital on medical bed rest awaiting her arrival. Each day I look into her eyes I look at my biggest blessing.” Said Wiggins.
Ms. Wiggins balances all this with a single mother tiara adorning her head.
Wiggins’s partner Jewel health circumstance dealt her with the necessity to live her life in a wheel chair.
Ms. Darbone’s says her greatest triumph is, “… continuing to live my life to the fullest, I could have given up when i was paralyzed from the neck down because of an autoimmune virus called Gullian Barre. I could have been bitter and angry about the fact I have to live my life with sickle cell and now in a wheelchair.”
For these young survival sisters, they do not allow all their woes to have them sit around and drown in tears from their sorrows.
One must admit, a SCD diagnoses does not bring excitement, but BLFSC is one way the duo finds purpose in having so much pain.
Darbone openly speaks of her difficulties with mental health and depression. Recent studies have shown that people with sickle cell disease and their care givers have a propensity to suffer from depression.
She goes on to say, “But fighting for my life and living my life unapologetically is definitely my greatest triumph and of course being involved with #Boldlipsforsicklecell has definitely been my greatest triumphs.”
I enjoyed talking to and learning from these ladies.
SICKLE CELL MOGULS – (Q&A)
Shamonica Wiggins, CEO, Dallas TX.
Jew-EL Darbone CFO, Lithonia, GA.
Sickle Cell Genotype
Shamonica Wiggins Type SS
Jew-EL Darbone Type SS
What is the official status of BLFSC?
BLFSC is a 501c3 Non profit organization
How did you come up with the concept of BLFSC?
I came up with the concept for #BoldLipsForSickleCell after fellow Sickle Cell Warrior, Shemeka McFarland posted a video asking the sickle cell community to come up with a challenge just for us, Sickle Cell Warriors. Something we could do to raise awareness without getting sick, unlike the risks of doing the ALS Ice Bucket Challenge. After watching her video I felt compelled to think of SOMETHING!!! So sitting in my room I looked over at my lipstick collection and the thought came into my head. I was already known for posting glam hospitals selfies and it was something I did during frequent hospital stays while I was pregnant. I came up with concept posts for men and women before sharing the idea because I knew people would be like “what does lipstick have to do with anything?” Sharonda Sikes and Jami Fox, both Sickle Cell warriors helped with the final name, because originally its was Bold and Burgundy Lips For Sickle Cell, I shared my idea with the sickle cell community and the rest is history.- Shamonica Wiggins
I knew I had to take quick action through social media which was the way our sickle cell community communicated, so I pushed the Campaign and posted it everywhere and tagging everyone possible. It caught on like wildfire on all social media platforms which in turn caught the attention of celebrities causing it to go viral, like Sham said the rest is history- Jew-EL Darbone
Where do you see BLFSC in 5 years?
In five years I see BLFSC as a thriving non profit that has acquired a staff and is a respected non profit within the community. Respected by warriors, advocates, healthcare professionals and researchers. That’s looked upon as leaders and innovators. Our main focus will still be our current 3 points of focus: awareness, advocacy and empowerment. We hope to be doing this in the community as well as the general public. We have a goal of making it onto Black Girls Rock! And I think 5 years might be enough time to achieve that. – Shamonica Wiggins
I see BLFSC continuing to thrive in 5 years I see us having our events being covered by national news and the general public being aware of #BLFSC and support us like they do with Susan G Komen and other nonprofits for cancer. Oh and yes Black Girls Rock will most definitely will happen I can see it now. -Jew-EL Darbone
What propelled you to turn the campaign into a Non Profit Organization?
Shamonica and I both saw that there was a need in our community that BLFSC could fill. There was such a buzz that was created by the campaign, warriors were wanting more and asking us what was next. So we turned into a full fledged organization that focused on the 18-35 sickle cell warrior demographic. Our organization focuses on Sickle Cell awareness, advocacy and empowerment. Our mission statement states #BoldLipsForSickleCell’s mission is to raise awareness and educate people about sickle cell disease and fight to help those that suffer from sickle cell live bold fulfilling lives. We do this by hosting various events and fundraisers that help those in our community live a life outside the hospital setting. We have had a 90s skating party, bowling for sickle cell and the first ever sickle cell prom. – Jew-EL Darbone
If an alien came down from space after humans no longer exist,
what would be three things you’d want the alien to know about sickle cell and BLFSC?
- I would want them to know that people with sickle cell are much more than just patients! That we are strong, resilient people
- That bold Lips For sickle Cell is much more than just an awareness challenge. That we stood for 3 things awareness, advocacy and EMPOWERMENT.
- And lastly that sickle cell warriors didn’t allow Sickle Cell to limit us or put us in a box. That we lived full lives in spite of sickness. -Shamonica
-That BLFSC isn’t just a social media campaign we are a empowerment movement for sickle cell warriors all across the world.
-Sickle Cell isn’t a death sentence, you can live a bold fulfilling life even with sickle cell
-Have awareness of your sickle status, Be your own best advocate, and empower yourself and others to truly live your life to the fullest.- Jew-EL Darbone
In the “Guess Who? Mama Pooh” series the main character Mama Pooh was created
to represent strong female warriors; What is your greatest triumph?
My greatest triumph would have to be being a mother to my 6 year old daughter Roree. I spent a whole month in the hospital on medical bed rest awaiting her arrival. Each day I look into her eyes I look at my biggest blessing. Her support and being proud of her mommy is a big motivator to keep me working hard with B lfsc – Shamonica
My greatest triumph is continuing to live my life to the fullest, I could have given up when i was paralyzed from the neck down because of a autoimmune virus called Gullian Barre. I could have been bitter and angry about the fact I have to live my life with sickle cell and now in a wheelchair. But fighting for my life and living my life unapologetically is definitely my greatest triumph and of course being involved with #Boldlipsforsicklecell has definitely been my greatest triumphs. – Jew-EL Darbone
Do you have any siblings? What are their sickle statuses?
I have an older brother. He’s 9 years older than me and does not have sickle cell or the trait. –Shamonica
One brother two younger sisters, my brother doesn’t have the trait but then my younger sister has the trait and my baby sister doesn’t have the trait I believe. – Jew-EL Darbone
What are your 5 must haves while you’re admitted to the hospital?
Carmex – Shamonica
My 5 must haves are cellphone, Ipad, clean underwear, headphones, chargers.- Jew-EL Darbone’