Where’s The Celebrity Support? The Unusual Business Of Standing Up For Sickle Cell Anemia

July 24, 2014  |  

Jimi Olaghere said sickle cell anemia has given him “a lifetime of pain,” but has also pointed his company in a fresh direction.

Olaghere knew his business needed a change after a recent sickle cell-related trip to the emergency room. While he waited for treatment, he saw #teamsicklecell scroll by on his Instagram page. The tech entrepreneur and owner of Geek Supply Company said it was then that he decided to use his tech skills to help combat issues surrounding his debilitating disease.

“After stumbling across the #teamsicklecell hashtag, I was engaged and I was excited. I wanted to build upon that and create awareness,” Olaghere said. “Right now there is really no one out there talking about [sickle cell] and I think we need to broadcast the message that it is okay to talk about it. As a child I was not encouraged to speak about how it affected me and even as an adult I have been afraid to talk about it because I didn’t want people to think that I couldn’t work or do regular things. We need to change how people think.”

At the time, the Newark resident was co-running Brick City Tech and owned the e-commerce startup Geek Cook USA. Geek Cook brought design products in from China through New York and New Jersey and had air, road and rail distribution.

While his product line remains largely the same, his company name changed to Geek Supply Company and he has been donating 10 percent of its profits to the Martin Center Sickle Cell Initiative in Indianapolis since this past Spring. The changes to Geek Supply Co. have taken form over the last year, and while Olaghere said the feedback so far has been “a bit slow,” he is confident that over time his efforts will pay off.

“I switched from a business-to-business [model] to a business- to-consumer [model] and now a portion of my profits will go to sickle cell charities,” Olaghere said. “I’ve never run a charity and I wasn’t sure how to create and encourage research so the Initiative really stepped in and outlined how they would spend and improve funds received from us and how this money can improve the lives of those suffering from sickle cell.”

While there are several U.S. and global organizations that help create awareness and education for sickle cell, patients can certainly use any help they can get. According to The Ultimate Health Disparity, a research paper written by Gary A. Gibson, sickle cell is one of the most common genetically transmitted diseases, with two million people worldwide and approximately 100,000 in the United States carrying the disease. While sickle cell is not racially motivated, it does occur most frequently in people who live in or have descended from Africa, South and Central America, the Caribbean, and the Middle East. Every year 1,400 U.S. children are born with this disease, while in Ghana there are 14,000. In Nigeria the number jumps further to 150,000. Without a cure for sickle cell, children and adults around the globe continue to suffer with little more than ibuprofen to ease their pain.

Dr. Michael DeBaun, director at Vanderbilt-Miharry Center for Excellence in Sickle Cell Disease, weighed in on the discussion and said that while the disease does affect a percentage of those of Caucasian descent, the ailment “disproportionately affects people of color.” With symptoms that affect every organ and bone in the body, the disease can cause an immense amount of pain in child and adult patients alike. With treatment and health care options dwindling for adults with sickle cell in the U.S. and around the world, DeBaun said the problems related to this disease have “become more of a humanitarian issue.”

“Part of the challenge is that sickle cell disproportionately affects African Americans. No one is rallying against this disease. You don’t have entertainers stepping forward to educate the community on this issue. I have tried for 20 years to approach some of the biggest names in our community about doing what Jerry Louis did for the Muscular Dystrophy Associations of America. There has been a resounding deaf ear,” DeBaun said.

“Why is it that our entertainment leaders with so much discretionary income choose not to embrace this disease that disproportionately affects African Americans? While I do think it is a complex issue, I believe there are people that can make a difference in the lives of those living with this disease and could channel money to leverage a greater outcome – and they choose not to.”

DeBaun himself has been a pioneer in the battle against sickle cell and has held a camp in the Midwest region where patients and parents could learn more about the disease and how to manage pain and emotional stress. Most recently, he also started “Sickle Cell Sabbath” in St. Louis and Nashville, where Black congregations are educated about blood donations and trait testing.

“We started Sickle Cell Sabbath to encourage people to donate blood. We have found that most don’t donate because they haven’t been asked and told about the true benefit of saving others. Once they know, they donate willingly and repeatedly,” DeBaun said. “We also supply sickle cell trait testing because individuals that are at risk to have children with sickle cell should be empowered with information. We have to try to take charge and make a difference. This has to start today if we want to have an impact 20 years from now.”

Olaghere agreed and said that through his philanthropy and donations, there is hope that others will join his initiative and make big changes for the future of the disease.

“At the end of the day I just felt like I had to do something. All my life I have been so frustrated by my lack of care and I have always felt so misunderstood. I spent part of my life living in Nigeria – and it’s even harder to get care there,” he said. “I want to build a community around this disease and create awareness. The conversation starts with us and hopefully if businesses see us doing this, they will also come on board. I know that if we all can come together there is hope that we can help change some of these practical problems – one business at a time.”

Trending on MadameNoire

Comment Disclaimer: Comments that contain profane or derogatory language, video links or exceed 200 words will require approval by a moderator before appearing in the comment section. XOXO-MN