If you are an entrepreneur and not a social entrepreneur, but you want to raise awareness and make a difference when it comes to the issues you care most about, how do you make the leap into advocacy? What’s the first step? If you find yourself pondering this, there is a lot that can be learned by the example of Mapillar Dahn and her My Three Sicklers (MTS) Sickle Cell Foundation. To understand how she did it, it’s important to first understand why she did it.
“My entrepreneurial journey started in 2012 due to the insensitivity of employers to the struggles that I faced raising my three daughters who all suffer from sickle cell disease,” Dahn tells MadameNoire. “I had been fired from jobs because my young children were hospitalized and I chose to be by their side. And even when I encountered employers who were understanding of our plight, as a single mother, if I wasn’t working due to a hospitalization, that limited my ability to provide for the whole family.”
In 2012, she took a leap of faith and with some self-taught tech skills under her belt, started her own business.
“Over the years, I have been fortunate to work from anywhere, even when my children are at the hospital,” she says. “Today, my business, MTS Customer Solutions, offers full-service web, print, graphic design, and social media services. I also hire customer service representatives to work from home, a component that was added to help anyone who needs the kind of flexibility in employment that I never had.”
Being able to prioritize the needs of her daughters and their fight with sickle cell disease is essential for Dahn. Between the three of them, Amatullah, Khadeejah and Hajar have had more than 100 blood transfusions, 10 surgeries, one stroke, and countless hospitalizations all within the last eight years.
“SCD is a very brutal disease and one that affects patients differently. It affects every aspect of one’s life, and so our household is a case study of the different spectrums of this disease, which translates to a lot of worrying on our part,” she says. “We worry about pain crises, stroke, acute chest syndrome, the weather, their mental health, their stress levels, making sure they are eating well, jaundice, iron overload, blood not being available, being hospitalized, and the list goes on and on and on.”
In addition to that, Dahn spoke of the added struggle that her daughters and others with sickle cell disease endure when they find themselves hospitalized often: their pain and symptoms are not taken seriously by medical professionals.
“They are being told that they are drug-seekers. They are being kicked out of hospitals prematurely and some are being banned from seeking care when they try to advocate for themselves,” she says. “It’s also important to understand that SCD patients didn’t have new treatment options for a long time, many decades in fact, which was frustrating for the community. Fortunately, thanks to advocacy, research, and investment, treatment options are finally available for SCD patients.”
One of those treatment options includes Oxbryta, the first medicine that specifically targets hemoglobin polymerization, which is the root cause of the disease. Despite such positive advances, there’s a lot more to be done. So with that in mind, Dahn decided to be the change that she wanted to see. In November of 2015, she established the MTS Sickle Cell Foundation, Inc. to not only help raise awareness of SCD but also serve as a source of support to families who are impacted by this disease. In the five years since the launch, they have been able to build a very engaged online presence of about 40,000 users from all over the world. Their awareness efforts have reached people across the globe through television, social media, billboard advertisements, speaking engagements, and more. It’s a major feat considering the organization’s humble beginnings.
“I remember when I started my organization, we were very much local to Georgia residents because that is where we are located. So, Georgia families benefited from our support services,” she says. “As word got around to families across the country and the organization grew exponentially due to social media, the question became, ‘do you service other states?’ Well, we couldn’t service other states because there aren’t many organizations doing what we do.”
The foundation has been able to do everything from having free social events that allow families impacted by SCD to come together, to paying for housing, food, utilities and transportation for SCD families and more.
“Do I not help prevent an eviction simply because this family who is struggling and needs help doesn’t live in my state? The answer to that is no,” she says. “Social media has brought us all together.”
What Dahn and the MTS Sickle Cell Foundation have been able to accomplish is truly inspiring. When asked what other entrepreneurs or aspiring ones could learn from her experience, she said the biggest takeaway is to believe in yourself and your purpose enough to make that jump.
“If there is something that you’ve always wanted to do, do your research, make a plan, and go for it.,” she says. “If you’ve wanted to be an advocate for sickle cell disease or another illness, do it. You don’t need permission from anyone. No one has a monopoly on advocacy. No one can tell your story better than you can. Find a way to make whatever it is you want to do uniquely you even if other people are doing that same thing; please don’t let that stop you. And lastly, be fluid and insightful enough to pivot if what you planned is not working.”
Thankfully, for Dahn, what she’s been working on has gone immensely well. Once concerned about failing her daughters, she’s now making them proud and helping countless people.
“I am very proud of the work that MTS Sickle Cell Foundation does to not only raise awareness of SCD but really be of support to families impacted by this life-threatening disease.”
To learn more about what Dahn is doing in the SCD space or to support the work of the MTS Sickle Cell Foundation, visit www.mythreesicklers.org or email email@example.com. One-hundred percent of donations made to MTS Sickle Cell Foundation go into supporting their mission. This foundation is a pro bono endeavor for Ms. Dahn, or as she prefers to call it, a labor of love.