Breaking the Sickle Cycle – Together
What is Sickle Cell Disease?
Sickle Cell Anemia, a genetic blood condition, results in excruciating pain and sometimes fatal consequences. Red blood cells change into a sickle shape and become lodged in blood arteries. The illness disproportionately affects persons of African and Hispanic/ Caribbean ancestry but the trait has also been found in those with Middle Eastern, Indian, Latin American, Native American and Mediterranean heritage. It has been estimated that 1 in 3 people in the United States are affected by the disease and millions worldwide suffer complications from sickle cell disease. It is present in one out of every 500 African-American births and over 3 million African Americans or one out of 12 have the sickle cell trait.
Sickle Cell Disease can take many different forms. The most common are:
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Hemoglobin SS Disease (Anemia)
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Hemoglobin SC Disease (Trait)
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Sickle Beta-Plus Thalassemia
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Sickle Beta-Zero Thalassemia
The majority of people with sickle cell disease have Hemoglobin S, but some also produce hemoglobin C, D, or E, which are other types of defective hemoglobin. Individuals can have Sickle Cell Disease because of co-inheritance of Beta Thalassemia.
Historically there has not been much investment in researching the causes and treatment of SCD. There is little understanding about the relationship between SCD and pain and there have been few advancements in finding better treatments for the disease. Sickle Cell Warriors of Wisconsin promotes basic and translational research and supports initiatives to increase community participation in clinical research. Basic and clinical research efforts are important to expanding knowledge of the pathophysiology of SCD and to ensure smooth transition of scientific advances into clinical trials.
Who We Are
Sickle Cell Warriors of Wisconsin (SCWWI) is a 501(c)(3) nonprofit organization dedicated to advocating, educating, and providing compassionate support to individuals and families affected by Sickle Cell Disease (SCD) and Sickle Cell Trait. We are the only statewide community-based organization in Wisconsin focused on breaking the sickle cycle through outreach, mentorship, and partnerships.
A message from our executive director
Tokara Henry
Non-Profit Organization Director
I am Tokara Henry, Executive Director of Sickle Cell Warriors of Wisconsin, Community Based Member Organization of the Sickle Cell Disease Association of America. I have been a dedicated advocate for individuals living with Sickle Cell Disease for the majority of my life. This cause is deeply personal to me, as I lost my cousin, Carlotta Thomas, who was more like a sister to me, due to complications of Sickle Cell Disease at the age of 44 on November 8, 2013. Watching how Sickle Cell Disease ravaged her body was both heartbreaking and motivating. Despite her pain, Carlotta faced each challenge with an inspiring resilience that deeply moved me and reinforced my commitment to this cause. I learned from her strength that true endurance is not just physical but rooted in an unyielding will to keep moving forward, no matter the burden.
Our Mission and Vision
Our Mission
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Sickle Cell Warriors of Wisconsin's Mission is to promote and assist in the well-being of individuals and families living with Sickle Cell Disease, Sickle Cell Trait, caregivers, community members affected by Sickle Cell Disease, and Ro blood donors. We aim to empower patients, support our medical teams, and educate organizations about the needs of Sickle Cell Disease patients to improve their overall wellness and quality of life.
Our Vision
We envision a community where everyone with Sickle Cell Disease has immediate access to high quality affordable health care, education and training that empowers patients to be advocates for themselves and manage their health and wellness. If we are successful, patients and their families will manage with minimal complications while living a longer healthier lifestyle.
Our Programs
We offer a variety of programs designed to support individuals and families navigating the challenges of Sickle Cell Disease:
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Virtual Empower Hour Care Collective Group: Join our monthly Empower Hour Care Collective groups where patients, caregivers, and allies come together to share, learn, and heal.
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Community Health Navigator: Meet with our dedicated health navigators to get personalized guidance and resources for managing Sickle Cell Disease.
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Advocacy & Education Training: Learn how to become an advocate for Sickle Cell awareness and get trained in educating others about the disease.
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Sickle Cell Data Sharing: Participate in our data-sharing initiatives to help improve understanding and treatment of Sickle Cell Disease.
How You Can Help
Your support is crucial in helping us make a difference. Here’s how you can get involved:
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Donate: Your donations help us fund our programs and provide much-needed resources to those living with SCD.
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Ro Blood Donor: Become a life-saving Ro blood donor, helping patients who need specialized blood for transfusions.
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Volunteer or Partner: Join our team as a volunteer or explore partnership opportunities to support our mission.
Sickle Cell Warriors of Wisconsin Blood Drive
Sickle Cell Warriors of Wisconsin Blood Drive
A Book Signing Event
James Griffin book signing, connecting the drops community event hosted by Versiti Blood Center of Wisconsin