Warrior’s Spirit. Champion’s Crown.
Together, we’re building a community where no warrior fights alone. From hospital comfort kits to emergency financial assistance, our programs are designed to meet patients where they are.
Our mission is to advance patient advocacy, public education, healthcare accountability, compassionate care, and research awareness while empowering individuals and families affected by sickle cell disease.
Every patient deserves dignity. Every voice deserves to be heard. Every life matters.
Every drop tells a story. Every life matters. Together we advance awareness, advocacy, education, and compassionate care for those living with sickle cell disease.
Meet the Founder
Nikia R. Noisette
Founder & Executive Director
My name is Nikia R. Noisette, and I founded the Nikia R. Noisette Sickle Cell Foundation after living with sickle cell disease for nearly five decades. My life’s journey has taught me that advocacy, education, accountability, and compassion have the power to transform healthcare and save lives.
I was born with sickle cell disease and have spent my life navigating a healthcare system that has often failed to see the person behind the diagnosis. I have endured countless pain crises, blood transfusions, aplastic anemia, avascular necrosis of my knees and hip, the loss of my gallbladder, and the permanent loss of my spleen. As a child, I was told I would likely not live beyond the age of twenty-one.
I did.
Like many individuals living with sickle cell disease, I also experienced the unintended consequences of long-term opioid treatment. Years of medically prescribed pain medication eventually led to dependence on OxyContin. In 2011, I made the difficult decision to reclaim my life, and by the grace of God, I successfully overcame that addiction.
Today, my pain management reflects that commitment. At home, I rely on Tylenol and herbal teas rather than opioid medications. If a sickle cell pain crisis becomes severe enough that Tylenol or herbal tea is no longer effective, I seek emergency medical care instead of managing it with narcotics at home.
Even with that history, I have experienced the painful stigma that many sickle cell patients know all too well, being labeled a “drug seeker” while seeking treatment for a documented medical condition. Those moments reinforced for me that sickle cell disease is not only a medical challenge; it is also a battle for dignity, understanding, and equitable care.
Those experiences transformed my pain into purpose.
I founded the Nikia R. Noisette Sickle Cell Foundation to ensure that no person living with sickle cell disease has to fight alone. Our mission is to advance advocacy, education, healthcare accountability, research awareness, and compassionate care while empowering patients and families with knowledge, support, and hope.
My work is deeply personal because I am not simply an advocate, I am a patient. Every policy I fight for, every educational program I develop, and every life I hope to impact is rooted in lived experience.
I have survived what I was told would end me. Now I dedicate my life to helping others not only survive but thrive.
Education. Advocacy. Accountability. Change.
