Today we’d like to introduce you to Tomia Austin.
Tomia , please share your story with us. How did you get to where you are today?
After a year of working as the executive director of the As One Foundation – at 40 years old – I found my life passion – sickle cell trait literacy. I am described as a spiritual, southern girl who loves my my husband, my family, my alma mater, Florida A&M University, good food, sports, traveling, dogs and values human connection. My favorite quote is, “I am human therefore nothing human is alien to me,” by Dr. Maya Angelo. As much as possible, I try to live in a judgment-free, fun-loving space that is open to all that life has to offer. Orange is my favorite color and I’m actually ok with wearing it every day. With all this character and texture in my life, I hadn’t found that thing that wakes you me up at night with ideas that have to be jotted down or explored – that thing I’d do, even when not paid to do it. That “thing,” for me, is sickle cell trait education, which I found through my work with the As One Foundation. It was evident by the fact that at one point, being a young organization could not sustain by annual salary. I did not leave. Not for one second did I even consider leaving. I continued to work as a 100% volunteer, pouring myself into the work of touching hearts, giving hope and changing lives – our motto.
The original mission of the Foundation was to help empower youth to unlock & unleash their full potential through athletics, education and spiritual enrichment. Since the foundation was also established to honor the memory of the founder’s late brother who died of exhaustion & dehydration complicated by sickle cell trait, I authored a program – Operation Hydration – to bring awareness to sickle cell trait and promote hydration as prevention of its adverse effects such as exertional sickling, primarily in school settings. At my urging, the new mission of the foundation became to educate and increase awareness of sickle cell trait while encouraging youth to achieve their dreams in the face of life’s challenges.
As I approach ten years with this organization, our financial situation has met its peaks and valleys and I have sustained on a monthly salary of $1,500. I am more pleased by our superlatives such as awarding over $100,000 in scholarships to high school seniors pursuing college degrees and in the hundreds of students, coaches, parents, etc. that have received thousands of hours of FREE sickle cell trait education and in supplement to the education we are into our second year of providing free sickle cell trait blood tests to help the 4 million people in America living with sickle cell trait of African, Latin, Asian, Indian, Italian, Irish, Mediterranean, Greek and Turkish descent know their status. I am most grateful for my very generous spouse who affords me the opportunity to follow this passion to provide sickle cell trait education as much as and everywhere I can.
My 20+ years of dedicated work in the higher education and not-for-profit sectors fuels my pursuit of health literacy for disadvantaged populations – especially young athletes of color. My work focus and research interest areas include genetics, sickle cell anemia, and sickle cell trait, dehydration, asthma, youth sports, high school, college and professional athletics, physical activity and obesity. I speak comfortably in various community settings on national and international levels in live, digital and virtual platforms, while blazing a global trail of sickle cell literacy. As a telecommuter to Metro Houston, Texas in my executive role, I make my home in Metro Atlanta with my husband, Douglas.
We’re always bombarded by how great it is to pursue your passion, etc. – but we’ve spoken with enough people to know that it’s not always easy. Overall, would you say things have been easy for you?
Easy? What’s that? All choices have consequences. Being the colorful person that I am, my colorful choices have certainly resulted in some colorful results. Let’s see? I graduated from a private Christian school in a graduation class of FOUR – yes – one, two, three, four seniors. It was an environment that fostered great and lasting friendships to this day but the culture shock of going from very, very small classes to college classes with 300+ enrolled is lasting. Here’s the abbreviated version of my college experience: As a college freshman, I was accepted as a Doctor of Pharmacy major – a five-year program. I changed my major after a couple of years, then earned a Bachelor of Science degree in Broadcast Journalism, then a Master of Education, Specializing in Sports & Leisure Management. AND then, 20 years later, earned a Doctorate of Public Health from the Institute of Public Health in the College of Pharmacy & Pharmaceutical Sciences – back where I started as a freshman at Florida A&M University. Talk about a full-circle moment!
Answering to Dr. Tomia Austin is something I’m still getting used to, but it comes with the territory of putting in long hours of research to become a credible subject matter expert. For me, the subject matter is a sickle cell trait. But one certainly does not have to have a Ph.D. to know the highs and lows associated with sickle cell trait. Hence the term #TraitWarrior. What is a #TraitWarrior? I’ll explain with some context. Sickle Cell Disease is a very serious blood disorder that is the result of the person inheriting two copies of the abnormal hemoglobin gene – one from each parent. These abnormal blood cells can wreak havoc such as pain crises, strokes, organ removal, etc. in people with sickle cell disease. Many of them suffer in silence because there are no real visual indicators except for jaundiced eyes. They are affectionately known as Warriors due to their pushing through the literal, emotional and psychological pain of sickle cell disease. Well, a growing body of research is showing that sickle cell trait carriers are also enduring pain crises, chronic fatigue and unfortunately, even death. So, I declared anyone living with sickle cell trait, are caregivers of people living with sickle cell trait or have succumbed to sickle cell trait a #TraitWarrior. The hashtag offers the digital searchability of shared experiences because often #TraitWarriors also believe their doctors’ advising that sickle cell trait is benign. #TraitWarrior is also a weekly Facebook-based show that discusses SCT and highlights individuals, including SCT athletes’ success stories of excelling in collegiate and professional sports due to knowledgeable and compliant coaching and training staffs. Unfortunately, some of the stories end tragically due to SCT knowledge gaps. #TraitWarrior serves as a digital support group to empower participants through shared experiences to increase sickle cell trait awareness. #TraitWarriors are not alone. We are many. Everyone must know.
So, as you know, we’re impressed with As One Foundation – tell our readers more, for example, what you’re most proud of and what sets you apart from others.
The As One Foundation is about the business of Touching Hearts, Giving Hope and Changing Lives. Our mission is to educate and increase awareness about sickle cell trait while encouraging youth to achieve their dreams in the face of life challenges. My title is an executive director but I’m more like chief letter folder, envelope stuffer and stamp sticker. We park our egos at the door and do what we have to do to build the case for sickle cell trait education and testing. We exist because of the story of two identical twin brothers – Devard & Devaughn Darling – who were born in Nassau, Bahamas, much to the surprise of their parents and doctor who had been hearing two hearts beating AS ONE. The twins were born with sickle cell trait, but would not learn of their sickle cell trait status until they got to Florida State University (FSU) where all athletes are mandated to be screened for sickle cell trait. They would play and almost win a national championship as true freshmen. Excited to put in the work to win the next year, they were completing indoor mat drills at FSU during off-season workouts and on February 26, 2001, Devaughn would die of exertional sickling, a condition that affects people with sickle cell trait who are overexerted, dehydrated and deprived of proper recovery breaks. In other words, exertional sicking is preventable.
The As One Foundation is leading the charge of educating young athletes, their coaches, trainers and parents about sickle cell trait. We also offer free screenings. There are some 2.5-4 million people in the U.S. that have are sickle cell trait positive but most of them don’t know their status. They certainly don’t know that sickle cell trait is not a condition reserved for only African Americans, but in fact, can affect any person of African, Latin, Asian, Italian, Irish, Mediterranean, Greek or Turkish descent. They may not know that sickle cell trait is also associated with chronic fatigue, pain, splenic infarction and even a kidney cancer called Renal Medullary Carcinoma. Sickle cell trait literacy has become my personal passion. I am most proud that the work of the As One Foundation ensures Devaugh’s death was not in vain as we seek to reach all of the 4 million sickle cell trait carriers in the U.S. and the 300 million worldwide.
So, what’s next? Any big plans?
Founded in 2007, we are looking to refresh our logo and clean up our branding as we prepare to expand our reach. To date, our programs and activities include the Devard & Devaughn Darling Scholarship award, the Devard and Devaughn Darling Football camps, Operation Hydration – our sickle cell trait education and awareness program, the Darling Dash 5k/1k Race for Sickle Cell Trait where were celebrate the heart of Devaughn and the Sickle Cell Trait Education Symposium (SCTES.) The SCTES is an intense day-long workshop for clinical degree-seeking students to learn about sickle cell trait since most medical school curriculums spend just about five minutes on sickle cell trait. This explains why there is such a disconnect sickle cell trait patients report issues of pain, fatigue, etc. to their doctors who don’t recognize sickle cell trait as a possible cause due to the fact that they’re taught it is a benign condition that offers no real need for concern. We look forward to educating clinicians in order to shift the paradigm more toward what sickle cell trait patients are reporting. We’re also looking forward to formally collaborating with a growing but tight-knit group of sickle cell trait focused organizations throughout the U.S. We have some really big plans that we’ll hold close to the chest for now, but we’ll be sure to keep the WHOLE WORLD posted, so stay tuned.
Pricing:
- Every $10 donated provides a free sickle cell trait screening.
Contact Info:
- Address: 6725 South Fry Road, Ste 700 #296
Katy, TX 77494 - Website: www.AsOneFoundation.org
- Phone: 832-308-9984
- Email: Tomia@AsOneFoundation.org
- Instagram: @AsOneFoundation
- Facebook: @TheAsOneFoundation
- Twitter: @AsOneFoundation
- Other: https://facebook.us19.list-manage.com/subscribe?u=2cf2aa16993894730e1a974e9&id=2f4b4ac862
Image Credit:
Personal photo: VRG Photography & Tamala Huntley – Simple Life Digital, Ambitious Brown, photographer
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