Social Impact Heroes: Why & How Teonna Woolford of Sickle Cell Reproductive Health Education Directive Is Helping To Change Our World
I do my best to never take life for granted. I also make sure to celebrate even the smallest victories in life. As a survivor of a failed bone marrow transplant, I am aware that I have beaten the odds of survival. I’m grateful to have the opportunity to share my story in a way that might help others who face similar health challenges.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Teonna Woolford.
Teonna Woolford is the co-founder and CEO of the Sickle Cell Reproductive Education Directive (SC RED), a 501c3 nonprofit founded in April 2021. She was diagnosed with sickle cell disease shortly after birth and established SC RED with the hope of providing resources related to reproductive health to people living with sickle cell disease. She currently resides in the Baltimore area and is studying at the University of Maryland’s Global Campus.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
I was diagnosed with sickle cell disease (SCD) shortly after birth and the disease has impacted nearly every aspect of my life over the years. When I was 18 years old, doctors recommend that I undergo a bone marrow transplant. If successful, it would allow my body to produce the healthy blood of a donor rather than my own. I hesitated to undergo the procedure when I learned that it would likely leave me infertile. I began looking for resources related to egg freezing and fertility preservation but didn’t find anything for people with SCD. The process was too expensive and my insurance would not cover the cost. I decided then that I wanted to work to make sure that anyone struggling with SCD or another health problem has access to reproductive health resources and fertility preservation technology.
At first, I wanted to start an organization that would give grants to SCD patients who wanted to freeze their eggs or sperm but when I met with my co-founders, we realized there was much more work to do for people with SCD. Eventually, the Sickle Cell Reproductive Education Directive (SC RED) was created.
Can you share the most interesting story that happened to you since you began leading your company or organization?
SC RED is still very new. We were designated a 501c3 nonprofit in April 2021, so we have been officially up and running for about six months. I’m proud to say that during the Sickle Cell Disease Association of America’s Annual National Convention, one of my co-founders and I were invited to speak at the Charles F. Whitman, MD Memorial Lecture. The theme of the convention was “Unstoppable: Working Together for Sickle Cell” and our lecture focused on how our personal and professional experiences inspired us to create SC RED. This was the first time the SCD Association of America invited a patient to give this lecture. It was an amazing moment.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
In the early days of SC RED, our team had a big meeting with an important government agency. I was so nervous when we began making our introductions, I forgot what our organization’s name was! Since then, I’ve learned to focus on staying comfortable before I give a speech or meet with anyone. I’ve gotten more comfortable in my role as a leader and haven’t forgotten our name since then.
Can you describe how you or your organization is making a significant social impact?
SC RED is the first organization to focus on reproductive health in the SCD community. Right now, people living with SCD don’t have the same access to fertility preservation that other disease communities do. This is a social and reproductive justice issue that our team is working to fix.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
I think all sickle cell warriors will be helped by our organization’s cause. SC RED is the first and only organization to address reproductive health in patients with sickle cell disease.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
I believe everyone can play a role in addressing reproductive health problems in the SCD community. As a society, we need to change how we see individuals living with SCD. In the past, people with SCD often did not live long enough to become adults. Patients were not seen as “viable” and “whole” people so reproductive health was never a priority — it was always about survival. Recent developments in the management of SCD have allowed the average lifespan of patients to increase dramatically. Now we are living well into adulthood, and we want the opportunity to start families like anyone else.
Politicians and policy makers also need to shift their attitudes to reflect the current state of the SCD community. Policies need to be changed to allow those living with SCD to access reproductive health services and other healthcare programs that could improve our quality of life.
As patients and caregivers, it is also important that we educate ourselves about our reproductive health. We should make sure it is prioritized as a topic of discussion at our medical appointments. It’s such an important conversation to have!
How do you define “Leadership”? Can you explain what you mean or give an example?
It’s hard for me to define leadership because I’m so new in my role but my philosophy is to remain teachable as a leader. There are other leaders in the rare disease community that I hope to learn from. My plan is to remain plugged in to the SCD community and rare disease community as a whole.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
Most of the things I wish someone had told me when I first started my advocacy journey are business-related. The biggest challenges I can recall are:
Filing a 501c3- I had no idea how the process worked when we started SC RED
Developing bylaws for our organization
Developing the organization’s budget
Day-to-day management of a nonprofit organization
Remaining focused on our area of expertise instead of trying to fix every problem that members of the SCD community face
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
I hope to play a role in a movement to ensure that public insurance such as Medicaid covers costs related to fertility preservation. I believe that families with lower incomes should have access to these technologies. I feel that having access to family planning options and reproductive health technologies should be a fundamental right in today’s world.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
I do my best to never take life for granted. I also make sure to celebrate even the smallest victories in life. As a survivor of a failed bone marrow transplant, I am aware that I have beaten the odds of survival. I’m grateful to have the opportunity to share my story in a way that might help others who face similar health challenges.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch, and why? He or she might just see this, especially if we tag them. 🙂
I would love to have a meal with Michelle Obama. I admire that she publicly spoke about her own struggles with fertility. I think it’s a topic that remained taboo for too long and she played a role in starting an important conversation about fertility struggles.
How can our readers follow you on social media?
For more information about SC RED, visit www.sicklecellred.org or follow us on social media:
Facebook: https://www.facebook.com/SickleCellRED
Instagram: https://www.instagram.com/sickle_red/
Twitter: https://twitter.com/SickleRED20
LinkedIn: https://www.linkedin.com/company/sc-red/
To connect with me, find me on social media:
Facebook: https://www.facebook.com/smilingjewel24
Instagram: https://www.instagram.com/sicklequeent/
Twitter: https://twitter.com/sickle_t
LinkedIn: https://www.linkedin.com/in/twoolford710/
Thank you for these fantastic insights. We greatly appreciate the time you spent on this.
Social Impact Heroes: Why & How Teonna Woolford of Sickle Cell Reproductive Health Education… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.