Adrienne Shapiro and Marissa Cors share more than a family bond. They share a mission.

Together, they have become powerful advocates for people living with sickle cell disease (SCD). They work to improve care, raise awareness, and ensure patients receive the respect they deserve.

Turning Personal Experience Into Advocacy

Marissa was born with sickle cell disease, an inherited blood disorder that affects approximately 100,000 Americans.

The disease causes red blood cells to become hard, sticky, and sickle-shaped. These abnormal cells can block blood flow, damage organs, and increase the risk of stroke and other serious complications.

Sickle cell disease can also cause episodes of severe pain that often require emergency medical care.

After years of watching her daughter navigate those challenges, Adrienne decided to take action.

She founded Axis Advocacy to help address the barriers many sickle cell patients face within the healthcare system.

Her motivation came from firsthand experience.

Too often, she watched healthcare providers dismiss or question Marissa’s pain during emergency room visits.

Giving a Voice to the Sickle Cell Community

Marissa has spoken openly about those experiences.

She frequently discusses the challenges of living with sickle cell disease through her Sickle Cell Experience Live events on Facebook.

Like many people with chronic pain conditions, she has encountered assumptions and stigma when seeking treatment.

Patients who understand which medications help control their pain can sometimes face unfair judgment. Some are treated with suspicion rather than compassion.

Marissa has used her platform to challenge those perceptions and advocate for better understanding of sickle cell disease.

Her message is simple: patients deserve to be heard, believed, and treated with dignity.

Fighting for Better Care and Better Treatments

Today, Adrienne and Marissa work together to advocate for change.

They speak out online, participate in public discussions, and share their experiences to help improve care for others living with sickle cell disease.

Their advocacy focuses not only on treatment but also on equity, education, and patient empowerment.

By sharing their story, they hope to prevent others from facing the same challenges.

Their efforts also highlight the urgent need for new therapies and potentially curative treatments.

CIRM currently supports four clinical trials to develop new treatments for sickle cell disease, including approaches that may offer long-term solutions for patients.

A Conversation You Won’t Forget

Adrienne and Marissa recently joined CIRM’s podcast, Talking ‘Bout (re)Generation, to discuss their journey and their advocacy work.

They speak candidly about the realities of living with sickle cell disease, the challenges patients continue to face, and the changes they hope to see in healthcare.

Their conversation is honest, powerful, and deeply personal.

Most of all, it reminds us that behind every disease are individuals and families working tirelessly to create a better future for others. Enjoy the podcast.