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Meet the Ambassadors
Why I advocate: My name is Nneka Okeke and I am a Sickle Cell Warrior. I used to be ashamed to tell people that I have SCD but now I want to use my voice to help spread awareness, educate individuals, and improve healthcare outcomes. Sickle Cell is a part of me but it does not define who I am and I will continue to live my life each and every single day!
I advocate for SCD because this disease continues to be stigmatized, underfunded and misrepresented. Due to the lack of awareness and focus, as patients we experience too much pain literally and figuratively because our health systems continue to fail us.
I advocate for sickle cell disease in the state of Utah because most patients with SCD are treated unethically due to the stigma associated with the need for narcotics to treat chronic pain related to the disease. I advocate for sickle cell disease because I give voice to those who don’t know their rights as patients and family members of patients living with SCD.
Why I advocate: My name is Olivia Meremikwu and I am a Sickle Cell Disease survivor. I am 25 years of age born and raised in Newark, NJ. I am a warrior, a Nigerian native at heart. I currently reside in Atlanta, GA where I advocate for those dealing with Sickle Cell. Impacting, providing solutions, and giving the same love that was given to me is my goal. Together we can go far ♥️
I advocate so that people with sickle cell know that they are not alone in this battle and to raise awareness and bring attention to this invisible illness. I want to help make a change in the world, where people who live with sickle cell can get the best treatment and care in hospitals across the globe until that day comes when we have a universal cure!
I am a 49 yr old Sickle Cell Patient. I have spent the majority of my life battling this debilitating disease physically, mentally and spiritually. I have chosen to be an advocate because of the disparities sickle cell patients face in so many forms daily.
I choose to be an advocate today because of my own personal journey with sickle cell disease. I remember all the trials and tribulations I and my family went through. Because of that journey, I want to stand shoulder to shoulder with other advocates and other Warriors to be part of the change we want to see and to remind people they are not alone in this journey, we are Warriors.
I advocate for sickle cell disease because I want to improve the quality of life for people like me. Providing patients and their families with the tools and support needed to navigate this chronic illness is an important part of that process. I plan to use my platform to educate people about sickle cell while conducting research aimed at exploring the science behind the disease.
Why I Advocate: My name is Rebecca Seavers and for over 30 years I have been an avid advocate of Sickle Cell. In 2017 I became the President of the Sickle Cell Association of Kentuckiana, a non-profit organization dedicated to helping families and children. As a mother of three children born with sickle cell and two granddaughters, being an Ambassador of Sick Cells provides a viable platform for me to continue to raise awareness and find resources for families in need.
My advocacy started when my daughter was born with [SCD] type SS. I had to not only be her voice but to be knowledgeable of what was going on within the sickle cell community. From then on I have taken an active role in bringing awareness and support to combat this disease.
I advocate to break down silos of those living with sickle cell through community engagement [by] working with hospital systems, community leaders, local government stakeholders, and school systems to improve the individual lives we interact with. This work includes spreading awareness, eliminating misconceptions, creating IEP educational resources and improving quality health care, and amplifying matters that mean the most to our Upstate NY community by creating a positive change and removing barriers. “Our lives begin to end the day we become silent about things that matter.” - Rev Dr. Martin Luther King Jr.
Why I Advocate: I remain optimistic and grateful for life. I work towards my goals and hope to affect real change in the sickle cell community. I am focused on not just living with sickle cell but thriving with it
I advocate because more voices are needed for individuals battling the horrible, overlooked sickle cell disease. More awareness and education must be provided to the public at upper and lower levels, and I am here to make sure those things are put in place to ensure the sickle warriors get the proper treatments needed to help combat sickle cell disease.
I advocate to raise awareness and educate others about what is far too often an invisible disease. SCD is a chronic condition but it doesn’t mean that individuals living with the disease can not accomplish great things! Everyone, including SCD patients, deserves to be treated with respect and dignity when seeking medical care. I hope through my advocacy work to shine a light on medical disparities in care and bring about indelible change.
I advocate because as I learn, I want others to be aware of the what, where, when, and how they are granted opportunities they may feel opted them out. We are in this together and we have to educate one another.
I advocate as a means to increase sickle cell education and awareness, elevate the voices of the community and improve healthcare outcomes that lead to sustainable increases in quantity and quality of life
I advocate to redefine the standard & stereotype of what living with Sickle Cell SS can be. To be a voice of inspiration that SS didn’t happen TO US, it happened FOR US. My life purpose and greatest fulfillment has come in spite of sickle cell and I will fight so that others can receive adequate treatment and lead purpose-led lives they design and not default to.
I advocate for SCD because it's essential to educate the masses about sickle cell disease. It's also important to be an example to other sickle cell warriors. Life should not be defined by sickle cell or any chronic illness. Despite our disability, we ALL have the ABILITY to dare, dance, and dream through the pain.
I am a parent and caregiver to my son with sickle cell. I advocate for him and for myself because I also have sickle cell.
I advocate for Sickle Cell Disease because it has been neglected for too long--both nationally and globally. Health equity, particularly non-discrimination and equality, is a basic human right and I look forward to playing an active role in pushing SCD to the forefront of the American Public Health agenda.
I advocate for sickle cell because I am a Sickle Cell Warrior! I have lost loved ones from this disease which makes me fight even harder to let the world know about what Sickle Cell truly is. I was born with the disease and I have it, it does not have me! My goal is to MAKE SICKLE CELL POPULAR!!
I Advocate because a close friend passed away from complications of SCD. After he passed I wondered, "How do I keep his legacy alive?" His legacy deserves more than an ode to Sickle Cell. It deserves a better understanding of the disease, advocacy for SCD, and the people who live with it daily for their stories deserve to be told.
I advocate for SCD to continue my brother’s legacy. My brother at the age of 23 years old passed away from the disease. My mission is to research and educate others on how to help a person who is born with HB SS. We are warriors who are on a journey to improve the quality of life for anyone who suffers from this disease. I am a Sickle Cell Warrior.
I advocate for my daughter, a Sickle Cell Warrior, that is full of love and light. I advocate for the voiceless and ensure their rights are protected. I advocate for justice and equity, giving all people a fair and respectful quality of life. I advocate to amplify the views of those that may not have the ability to share their story.
I advocate for SCD because of my son who was diagnosed at birth with the disease. I also want to help improve the quality of care for sickle cell warriors and break the stigma behind sickle cell.
I advocate for every warrior, present & future. Until we have our cure, know I can't stop and won't stop advocating.
Why I Advocate: Advocacy is more than support, It’s a lifestyle radiating change!
I advocate for sickle cell because it’s time to bring a voice to the voiceless. Many warriors do not have supportive families to help them fight this disease. Therefore, it’s vital that there are other support structures in place so warriors don’t fall through the cracks.
Why I Advocate: This illness is not me. It may be a part of my story, but it will never be strong enough to define me. Bringing awareness to sickle cell is so important to me because many Hispanics (Afro-Latino) like my parents don’t realize they carry the trait. I want to help educate the Latin community on this disease and bring some sort of hope to the younger sickle cell warriors that are in similar situations.
Why I Advocate: To give information on Sickle Cell Disease and share knowledge to obtain and give support.
Why I Advocate: I like to give back to the children and youth, to ensure they have a good opportunity, to make sure they have the best quality care, and the best education about sickle cell, and transition.
I advocate for the warriors that feel as if no one cares. Nothing’s worse than being vulnerable, in dire need of medical attention and being shunted aside. I have experienced this in more ways than one, and it motivates me to keep fighting for Sickle Cell patients so we won’t be forgotten within our medical system.