Sickle Cell: An organization working towards a paradigm change

The best motivation to solve a problem is when a person encounters the problem in his personal life. Teonna Woolford, the CEO, and Founder of a non-profit organization The Sickle Cell Reproductive Health Education Directive. She was diagnosed with Sickle Cell SS and personally understands the struggle of the patients and their families.

Born and brought up in Baltimore Maryland, Teonna Woolford has a very friendly and full-of-life nature and she has an extrovert personality. When she was diagnosed with Sickle Cell Anemia SS, she had to undergo several health complications. However, she was a true fighter at heart and recovered from numerous health complications like bilateral hip replacements, a failed bone marrow transplant, many pain crises, and several other complications. Today she shares a passion to bring effective change throughout the Sickle Cell community and understands the realities of those impacted by the disease.
Teonna Woolford global business leaders mag
The sickle cell disease has been a huge part of Teonna’s life but she continually strives to not let sickle cell define who she is. She has had the opportunity to discuss sickle cell advocacy with world leaders including Former First Lady Michelle Obama and Congressman John Lewis. She has been blessed to sit at some incredible tables and contributed to publications and working committees with the American Society of Hematology and NHLBI. Today, she is also the founder and CEO of a new non-profit organization, The Sickle Cell Reproductive Health Education Directive. SC RED is the first and only sickle cell non-profit to prioritize reproductive health. It is an organization working towards a paradigm change. Teonna was recently awarded the Innovative Leadership Award from Health 2.0.

Inspired by her journey, our team interviewed Teonna Woolford to help us understand her motivation to establish Sickle Cell Reproductive Health Education Directive.
1.Could you please start with a brief overview of the Sickle Cell Reproductive Health Education Directive (SC RED)?

Sickle Cell Reproductive Education Directive advocates for high-quality sexual and reproductive health care for individuals living with all types of sickle cell disease. We provide education on reproductive health concerns, establish standards for effective and high-quality reproductive health care across the life span, and advocate for policies and processes that will improve access to comprehensive reproductive health care. In everything that we do, we are motivated by how much we do not know and recognize that the work will continue to evolve.
2.What were some of the founding factors that led to the conception of the Sickle Cell Reproductive Health Education Directive?

As a woman with sickle cell when I pursued curative therapy in the form of a bone marrow transplant, I was discouraged to see that educational and financial resources around fertility preservation were limited to women with cancer. As an advocate in the sickle cell community, I’ve watched us have to prioritize survival over the quality of life while reproductive health has been on the backburner.
3.What are the services that you offer to individuals suffering from sickle cell diseases?

It is astonishing how much we do not know regarding sickle cell and reproductive health. Our team strives to educate individuals on reproductive health concerns, establish standards for effective and high-quality reproductive health care across the life span, and advocate for policies and processes that will improve access to comprehensive reproductive health care.
4. How will you describe the team at SC RED?

One of the things that we are most proud of is the makeup of our team. We realize that our work in reproductive health requires an interdisciplinary approach. Therefore, we have a mix of world-renowned doctors, researchers, individuals with sickle cell, and other advocates working together to drive our mission.
5. What have been the proudest moments in the journey of SC RED by far?

When SC RED was established, I never could have imagined how far we would come in a year. We’ve already established official partnerships with Be The Match and other important advocacy organizations. We’ve recruited some of the brightest minds to join our board and committees. One of SC RED’s cofounders and I were recently invited to speak during the Sickle Cell Disease Association of America’s Annual National Convention at the Charles F. Whitman, MD Memorial Lecture. We spoke about how our personal and professional experiences inspired us to develop SC RED. This was the first time the lecture was given by a patient.
6. What does the future hold for Sickle Cell Reproductive Health?

Our mission is global and requires a large team. Therefore, we are prioritizing funding and capacity building. We are looking forward to increasing efforts around policy making, education, research, and resources for those affected.
7. Is there any message or advice you would like to outline for the readers?

I’m grateful to have found my life’s purpose because of my diagnosis. I’m grateful to have survived numerous complications and I’m grateful that many people with SCD are living into adulthood and are healthy enough to plan to have their own families. I’m grateful that there are other people like me who are determined to make life better for those with SCD. But with my gratitude comes determination. Research is progressing, drugs are in clinical studies and important conversations are occurring surrounding the struggles our community faces, but I plan to continue my work until everyone with SCD has access to treatments that allow them to live the full lives they deserve.
Skip to content