Sick Cells and Avalere Health want to thank our Dialogue attendees for sharing so many interesting ideas which helped us create a Roadmap on how to advance care for individuals with SCD.
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.
Rebecca
Kentucky
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.
Queena
New York
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.
Gladys
New York
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.
Teonna
Maryland
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
Chauntey
Louisiana
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.
Nola
Pennsylvania
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.
Whitney
Louisiana
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.
Rae
Minnesota
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
Dana
New Jersey
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.
Dima
Massachusetts
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.
Tanika
Illinois
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.
Golda
Virginia
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.
Nikeyia
Missouri
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!!
Tricia
New York
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.
Tanya
New York
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.
Demitrea
Minnesota
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.
Crystal
New York
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.
Tristan
Pennsylvania
I advocate for every warrior, present & future. Until we have our cure, know I can't stop and won't stop advocating.
Cory
Georgia
Why I Advocate: Advocacy is more than support, It’s a lifestyle radiating change!
Kristyl
California
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.
Arelys
Florida
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.
Terrance
Illinois
Why I Advocate: To give information on Sickle Cell Disease and share knowledge to obtain and give support.
Sarai
New York
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.
Simone
Maryland
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.
