Steve

"My advocacy focuses on using storytelling and film to elevate the lived experiences of individuals and families affected by sickle cell disease. Through narrative-driven content, I aim to increase awareness, reduce stigma, and help translate real stories into education, community engagement, and policy impact."

I advocate because, as a dually board certified, Doctoral-prepared Psychiatric Mental Health Nurse Practitioner and Family Nurse Practitioner, I have witnessed firsthand the complex physical and emotional challenges faced by individuals living with sickle cell disease. I am deeply passionate about raising awareness of emerging treatment options, comprehensive pain management strategies, and the essential role of mental health care in improving quality of life. Through advocacy, I aim to amplify patient voices internationally, reduce stigma, and promote equitable care for the sickle cell community.

"I advocate because I live with sickle cell and I know the realities warriors face every day. My goal is to use my story and my voice to create more awareness, reduce stigma and help push for better care for people living with this condition across Africa and beyond."

"I'm a sickle cell warrior, a registered Nurse and going in for my Masters in pediatric nursing (MPN). I'm advocating for people to get more aware of this disease, reduce if not eradicate the stigma that warriors face, to impact healthcare service for these patients and be the voice of the voiceless."

As a SICKLE CELL warrior coming from a country with the highest prevalence of this disease, I advocate to make my people understand the needs to make inform life choices and having a policy that will reduce the burden for PLWSCD.

"I advocate because my sister was born with Sickle Cell Disease. Growing up, I frequently accompanied her to hospital visits and witnessed the challenges she faced – especially in adulthood. Her journey, combined with my graduate training, opened my eyes to the significant healthcare gaps affecting SCD warriors and their caregivers, as well as the educational gaps that plague medical professionals. The stories I’ve heard about patient care, racism and neglect are not only heartbreaking, but entirely preventable. My commitment to the sickle cell community runs deeper than my immediate family, and no matter where my Ph.D. takes me, I will continue to stand alongside SCD patients and their families in advocacy and awareness."

Why I advocate: For the past decade, as a survivor of a clinical trial half-match transplant, I’ve been using my story to advocate and instill motivation in fellow Warriors. I believe in the importance of representation, especially for a disorder that requires much more attention and awareness. I try to advocate using my lived experience, academic background, and published research, as I currently pursue my premed education at Harvard University and lend my voice whenever and wherever I can.

The reason why I feel I should advocate for voices of sickle cell and myself. Growing up I was diagnosed with sickle cell. It was challenging for me because back in the day, the doctors didn't have a lot of knowledge what sickle cell was. From the support of my big family that was there for me. My mother eventually taught me how to be strong no matter what the situation is. I will stand up for my rights and people. Let's work together and stand. I have a voice that I'm not afraid to speak up. Change will come.

As mother of three children , with two of them diagnosed with sickle cell, I want to be a part of the change for the future of the Sickle Cell community. I do not want them to fear the healthcare system or unfair treatment. I want my children and all warriors to know that once they enter any medical facility, they will get the best care possible. I know that using my platform and resources provided will assist in creating the change needed.

My advocacy journey began at fourteen years old, after being deemed “dramatic” by a health professional who completely invalidated my feelings. Deeply rooted systemic issues of racism, sexism, and religious bias have plagued our healthcare system, especially concerning warriors who suffer from SCD and/or chronic pain. As a warrior, I advocate for SCD so other warriors can have equitable healthcare. Sickle cell is a disease of healthcare disparities, in terms of being under-researched, poorly understood by the public, and the lack of appropriate therapies. So let’s make a difference, go into the public to be part of the stakeholders who play a role in improving access to care for sickle cell warriors.

Why I advocate: I am a mother of three amazing boys, two of whom are sickle cell warriors. I advocate for an equitable future for all sickle cell warriors. In addition to being a caregiver, I am the Sickle Cell Director and Newborn Screening Coordinator for Northwest Ohio. “Sickle cell disease has had a significant impact on my personal and professional life, and as a result, I’ve been trying to make improvements in a number of different areas to enhance the quality of life for my children and patients.

I am 68 years old and was first diagnosed at 62 years old with SCD after experiencing my first “major” crisis. After my diagnosis, I discovered the many stereotypes surrounding SCD. I also quickly realized as an older warrior the medical profession has pretty much written us off, not expecting us to live past 50. My goal is to bring more awareness to the unique needs of warriors over 50 as well as exploring more fully the impact of our lifestyle choices on the disease expression.