About Us.
We are Educating Communities, Empowering Families, & Giving Hope!
Our Mission
The Mission of Kids Conquering SCD Foundation, Inc.:
To dedicate with compassion to provide education, awareness, advocacy and outreach to improve the quality of life for individuals and families living with sickle cell disease and other hemoglobin disorders.
Our History
The grassroots of Kids Conquering Sickle Cell Disease Foundation started in 2004 as a support group at a local children’s hospital established by founder, Carla Lewis. During this time, we provided educational events, hospital visits, social events, & support resources. To meet the growing demands of community, our foundation established as a nonprofit organization in October 2014.
Today Kids Conquering Sickle Cell Disease Foundation is an achieved vision empowering the community through education while also providing help & hope to families. We are a dedicated non-profit organization raising awareness of sickle cell and related disorders while servicing children & young adults to improve health outcomes.
We are proud to have provided over 400 educational presentations to the community, locally, nationally, & internationally. We have also provided education and support resources to over 2000 individuals. Our organization provides outreach services, advocacy, an educational symposium & seminars, & support activities bridging the gap in the community.
In the US there are about 100,000 people living with sickle cell disease. Currently the state of Florida has the highest prevalence a of about 8,000 people living with sickle cell disease. We serve as advocates collaborating with organizations, healthcare providers, as well as public & government agencies to advocate for improved healthcare services, access to treatments and research to find a cure for sickle cell & associated rare diseases.
Carla Lewis, Founder & CEO
Our Founder & Executive Director
Carla Lewis is a compassionate advocate for those living with sickle cell & rare diseases. In 2004, Carla started the first sickle cell support group at a local children’s hospital in Orlando, FL which provided educational events, hospital visits, resources, & awareness to bridge a gap in the community. Today, she is the CEO & founder of Kids Conquering Sickle Cell Disease Foundation based in Orlando, Florida. The organization exists so children like Carla’s son & families that strive to fight challenges with serious life-threatening hemoglobin disorders are empowered with education, resources, & access to treatments. Carla’s vision is to see a universal cure developed so many warriors live disease free!
Carla Lewis graduated with a bachelor’s degree in psychology from York College in Queens, New York. She also completed a Nonprofit Management Certification Program at the University of Central Florida. Carla earned her certification as a Hemoglobinopathy Counselor in 2016. Carla is also a trained National Sickle Cell Research Advocate Facilitator who had the pleasure of completing the training program for National Sickle Cell Advocate Network (NSCAN) developed by National Sickle Cell Association of America (SCDAA).
Carla Lewis is a patient engagement consultant & advocate that participates in meetings to impact interest & funding research for rare diseases. Carla actively meets with legislative advocates & partners with organizations such as Sick Cells, Rare Disease Legislative Advocacy (RDLA), & National Organization for Rare Disorders (NORD) to educate & promote legislation that encourages more effective, efficient, & up-to-date healthcare policies.
Together We Are Breaking Barriers, Supporting Treatments, & Making a Difference!
Kids Conquering Sickle Cell Disease Foundation work is made possible because of our board of directors, advisory board, patient & caregiver ambassadors, volunteers, partnerships, & generous donors.
Board of Directors & Advisory Council
Board of Directors
Carla Lewis (President)
Makeda Ricketts (Board Secretary)
Shelley Merinda (Director)
Marlene Baker (Board Treasurer)
Cadean Lewis (Director)
Terri Booker Esq. (Director) Attorney & Corporate Responsibility Professional
Shannon Fenton, (Director) Regulation Specialist & Parent Advocate
Advisory Council
Eboni Davis DN, APRN, FNP-BC
Meisha Chatrie, MSC
Dr. Joy Bonnaig
Dr. Connie Mitchell, D.C., M.Ed., B.S.
Tira Parker