RARE Daily

Rare Leader: Teonna Woolford, Co-Founder and CEO, Sickle Cell Reproductive Health Education Directive

October 14, 2021

The Basics
Name: Teonna Woolford

Title: Co-founder and CEO

Organization: Sickle Cell Reproductive Health Education Directive

Social Media Links:

Disease focus: While pain is a major hallmark of sickle cell disease, there is so much more. Sexual and reproductive health in this community is often overlooked. The organization launches programs and initiatives that bring awareness to sexual and reproductive needs across the lifespan for individuals living with sickle cell disease.

Headquarters: Baltimore

How did you become involved in rare disease: I have sickle cell. My advocacy started after my bone marrow transplant. I noticed that there was a lot of conversations about curative therapies and the success stories, but I rejected. I started sharing my story about the mental toll and the fallout from a bone marrow transplant. I’ve had the opportunity to work with teams at NIH and American Society of Hematology, NORD, and a number of sickle cell organizations.

Previous career: Student

Education: Currently studying psychology at the University of Maryland Global Campus

The Organization
Organization’s mission: Our mission is to advocate for high quality reproductive healthcare for individuals affected by sickle cell disease.

Organization’s strategy: We provide education, awareness, advocacy, and support. A large part of that has to do with our team. We have a team of patients, doctors, researchers, and policymakers all working together.

Funding strategy: A lot of it will be through corporate sponsorship. We are just getting started. There are grassroots efforts too.

What’s changing at your organization in the next year: We just got our 501c3 status in April. In the next year are going to be launching all of our programs.

Management Style
Management philosophy: Collaboration and teamwork. I am nothing, or the organization is nothing, without the team. Also, engagement with the sickle cell community to make sure that we’re really meeting the needs of the people.

Guiding principles for running an effective organization: Inclusivity, engagement, and collaboration.

Best way to keep your organization relevant: Because we are focused on reproductive health, we have found that it’s bigger than sickle cell. We’ve been able to attach ourselves to other disease communities because reproductive health touches everyone. There’s a lot of talk about disparities and inequities and reproductive justice, and the black maternal health crisis. We are going broader than even sickle cell.

Why people like working with you
: I’m pretty easy going and easy to get along with. I think it’s my personal story as well—my struggles with infertility. People see how passionate I am and that I’m trying to change things so that other people don’t have to go through what I went through.

Mentor Kim Smith Whitley. She’s one of my co-founders and I’ve known her since I was 15. She has taught me a lot. She’s my top mentor, but I have a lot. I consider myself to be the product of mentorship. It’s really important.

On the Job
What inspires you: The sickle cell community. There are so many gaps and unmet needs. Just remembering everything we are doing is to directly benefit them.

What makes you hopeful: The timing. The country is primed to have conversations and address inequities. We’re living in a new era of sickle cell where we’re finally getting the research, funding, and treatments we deserve.

Best organization decision: The team that I’ve put together.

Hardest lesson learned: Realizing that I can’t do everything at once. There are so many problems and I want to tackle everything, but I have to be strategic and prioritize certain things so that we’re successful and sustainable.

Toughest organization decision: I don’t feel like I’ve had to make one yet.

Biggest missed opportunity: I don’t think we’ve had any yet.

Like best about the job: It’s cool to find my footing as a leader. I never really envisioned myself to be running a nonprofit. I have been evolving and becoming confident.

Like least about the job: It’s time consuming. I don’t get a lot of personal or family time right now as we are trying to get off the ground.

Pet peeve: Disorganization

First choice for a new career: Journalist

Personal Taste
Most influential book: Becoming by Michelle Obama

Favorite movie: Imitation of Life

Favorite music
: Anything Motown

Favorite food: Macaroni and cheese

Guilty pleasure: Real Housewives

Favorite way to spend free time: Hanging out with my family.




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