We Are The Cure: How Representation, Awareness, and Community Action Can Save the Lives of Sickle Cell Warriors

Sickle cell disease has impacted families for generations, especially within the Black community, yet conversations about bone marrow and organ donation still remain limited. As a result, thousands of sickle cell warriors continue to wait for cures that already exist but cannot reach them because the community simply does not have enough donors.

Recently, I had the opportunity to sit down with Tahirah Austin Muhammad, a member of the Sickle Cell Consortium and someone currently on the kidney transplant list. Her story, combined with the Consortium’s national campaign, We Are The Cure, paints a powerful picture of what is possible when awareness meets action.

This blog highlights what you need to know, what the data tells us, and how you can become part of the solution.

A Movement Born Out of Urgency and Hope

The Sickle Cell Consortium has launched We Are The Cure, an initiative created to increase Black participation in bone marrow and organ donor registries. This is not just a campaign. It is a lifeline for thousands of people.

Sickle cell disease affects African Americans at significantly higher rates than other populations. Yet the number of Black donors in national registries remains critically low. Because matching is most successful among individuals of the same ethnic background, our community faces the greatest barriers to treatment.

Dr. Lakiea Bailey, Executive Director of the Sickle Cell Consortium, summarized the urgency of this movement with one powerful statement:

“Representation in the registry saves lives. Bone marrow and organ donations are not just acts of generosity. They are acts of justice and equity. By stepping up, the Black community can directly impact survival rates for sickle cell warriors.”

A Personal Perspective From a Warrior Waiting for a Cure

Tahirah Austin Muhammad, who lives with sickle cell disease and is actively waiting for a kidney transplant, shared what the campaign means to her personally.

“For me, We Are The Cure is about increasing awareness among our own community. Black and brown people need to understand how important bone marrow and organ donation is. When you go into dialysis centers, many of the faces you see are ours. The lack of transplantation in our community is painful, and much of it is tied to equity, systemic racism, and lack of education.”

Her words serve as both truth and testimony. They highlight the reality that many in our community see daily but may not fully understand.

Why Bone Marrow Donations Matter

Here are the facts that every household should know:

• A bone marrow or stem cell transplant is currently the only known cure for sickle cell disease.
• Matches are most successful when donors and patients share the same ethnic background.
• Increasing the number of Black donors in the registry ensures more equitable chances for patients in need.

Anyone can begin the donor matching process by texting SC3 to 61474. A quick cheek swab is all it takes to see if you could be a match for someone who desperately needs a cure.

According to national data, Black patients have only a 29 percent chance of finding a compatible donor, compared to 79 percent for white patients. This inequality is not only unacceptable. It is deadly.

Debunking the Myths and Misconceptions

Many people hesitate to register as donors because of fears or misinformation. Tahirah addressed these concerns directly.

“Most people think marrow matching is painful, but it really starts with a simple cheek swab. It is quick and not invasive. There are also myths that doctors will not save you if you are registered as an organ donor, and those things are simply not true.”

The more we educate our communities, the more we dismantle these harmful myths.

The Role of the Sickle Cell Consortium

The Sickle Cell Consortium continues to lead the fight through:

• Community events

• Digital awareness and outreach

• Faith based partnerships

• HBCU engagement

• Patient centered advocacy

• Education for families and supporters

Tahirah captured the importance of their work beautifully.

“The Consortium is vital because they are doing the work. They increase awareness, increase the number of donors, and make sure our community has access.”

A Call to Action From a Warrior to the World

I asked Tahirah what she would say to those who are unsure about joining the donor registry. Her answer was powerful.

“We have to understand that we can only save ourselves. This campaign says We Are The Cure because I need you and you need me.”

Those words are more than a quote. They are a call to unity.

How You Can Become Part of the Cure

The Sickle Cell Consortium invites every member of the community to join the movement. By registering, individuals can become the cure that someone with sickle cell disease is waiting for.

Here is how you can get involved:

1. Begin the donor process

Text SC3 to 61474 to start the cheek swab match test.

2. Learn more about the initiative

Visit the National Kidney Registry at
https://www.nkr.org/udb453

3. Support the We Are The Cure campaign

Donate or learn more about the movement at
https://sicklecellconsortium.org/donate-to-sc3

4. Stay connected

Follow the Sickle Cell Consortium on Instagram and Facebook at
Sickle Cell Consortium

Your decision could save a life. Your yes could be the beginning of someone’s healing journey.

Because together, We Are The Cure.

About Larry W. Robinson

Larry W. Robinson is an award winning media personality, inspirational speaker, author, and publisher dedicated to educating, empowering, and uplifting communities through faith based storytelling. For more than two decades, he has served as the founder and host of Gospel Updates, a trusted platform highlighting gospel artists, faith leaders, community advocates, and powerful stories that inspire hope.

Known for his compassion and commitment to meaningful conversations, Larry uses his voice to amplify causes that matter, including health equity, mental wellness, creative entrepreneurship, and spiritual development. His work spans radio, digital media, live events, print publishing, and motivational speaking, reaching audiences across the nation with messages of encouragement and truth.

Whether interviewing influential leaders, creating life changing content, or spotlighting everyday heroes making an extraordinary impact, Larry remains committed to one mission. To inform, inspire, and ignite purpose in the lives of others.

Learn more at www.GospelUpdates.com.