A Patient-Led Bridge Between Patients and the Systems Meant to Serve Them
The Nikia R. Noisette Sickle Cell Foundation is a patient-led organization created from lived experience, compassion, and the belief that patients deserve a real voice in every system that affects their lives.
Institutions have departments, representatives, and resources to speak for them. Patients, especially those living with sickle cell disease and other medically complex conditions too often face those systems alone. Our foundation stands in that gap as a much-needed bridge, helping patients understand their options, express their concerns, locate assistance, and advocate for respectful, accountable care.
We provide patient advocacy, assistance completing forms and applications, help locating community resources, and support preparing and filing healthcare complaints. We also offer compassionate religious and spiritual support to people of every denomination and faith background, without judgment or pressure.
Drawing from the founder’s personal experience overcoming opioid dependence, we provide lived-experience peer support and share the practices, resources, and encouragement that helped her through recovery. This support does not replace licensed addiction counseling, medical treatment, legal advice, or emergency care.
We do not speak over patients, we help ensure they are heard. Our work is rooted in education, advocacy, accountability, and meaningful change.
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.
Request Support
If you or a loved one is living with sickle cell disease or another medically complex condition, tell us how we may support you. Assistance may include patient advocacy, help completing forms, locating community resources, preparing healthcare complaints, lived-experience peer support, spiritual encouragement, or requesting a Patient Comfort Kit.
Complete the form and briefly describe the support you need. A foundation representative will respond as soon as possible. Patient Comfort Kits are available based on eligibility, hospitalization verification, service area, available supplies, and funding.
This form is not for emergencies. The foundation does not provide medical diagnosis, licensed counseling, legal representation, or emergency services.