Genetix Biotherapeutics and the National Football League Alumni Association are teaming up on a national awareness and education campaign aimed at one of the biggest challenges facing people living with sickle cell disease: knowing that new treatment options exist.

 

The partnership will use community engagement, education and personal stories to spotlight the realities of living with sickle cell disease and help patients, families and healthcare providers better understand available treatments and support services.

 

Despite the availability of FDA-approved genetic medicines—including one-time gene therapies that can dramatically transform the lives of people with sickle cell disease—many families remain unaware that these options are available.

 

Sickle cell disease is the most common inherited blood disorder in the United States, affecting roughly 100,000 people and disproportionately affecting Black communities. The disease is caused by a genetic mutation that produces abnormal hemoglobin and can trigger debilitating pain crises, stroke, organ damage and other serious complications, while reducing life expectancy and quality of life.

 

For decades, treatment has largely centered on managing symptoms. Advances in genetic medicine, however, have opened the door to one-time treatment approaches that could fundamentally change the course of the disease for eligible patients.

 

“For decades, Genetix has been committed to the sickle cell disease community, working alongside patients, families, advocates, and healthcare providers to advance care. Partnering with this community led to the development of an FDA-approved, one-time transformative treatment, making genetic medicine a reality for many people living with this debilitating disease,” said David Meek, Chief Executive Officer at Genetix. 

 

“Yet despite hundreds of patients now treated, the vast majority of eligible patients remain untreated, primarily due to lack of awareness that these treatment options are available today. We are excited that together with the National Football League Alumni Association, we will expand education and foster meaningful community conversations to improve the quality of life of those living with sickle cell disease.”

 

The initiative will bring the NFL alumni community into the effort, using the experiences of current and former players to make the disease—and the choices facing patients and families—more visible.

 

“The National Football League Alumni Association is proud to partner with Genetix to widen awareness and promote education on treatment options for people with sickle cell disease,” said Brad Edwards, Chief Executive Officer of the National Football League Alumni Association. 

 

“Many former NFL players and their families understand firsthand the devastating impact of this disease and the importance of ensuring patients and families have knowledge and access to available treatment options. By elevating personal stories with local community engagement from current and former players, we aim to raise awareness and connect patients and families with educational resources that support actionable next steps.”

 

At the heart of the partnership is a push to turn awareness into action—helping more patients and families recognize their options, engage with healthcare providers and find resources that can guide decisions about treatment.