Mapillar Dahn is president of MTS Sickle Cell Foundation, a national non-profit organization she founded in 2015 in honor of her three daughters, who all suffer from sickle cell disease. In the year since its inception, MTS Sickle Cell Foundation has had one mission: to increase the public’s awareness of sickle cell anemia by supporting awareness, education and research pertaining to sickle cell anemia as well as providing support to families affected by this life threatening disease. For her many contributions to the sickle cell community, Mapillar Dahn was named a Woman of Influence 2016 by Life Changers Club International and The Game Changer Award by Winning the Battles in Your Mind’s 5th Annual Black Tie Gala. She also serves as a Board Member of The American Red Cross Minority Recruitment Advisory Board. The foundation hosted it’s first photo shoot for sickle cell families, sponsored 26 children battling sickle cell disease to a week-long summer camp and sponsored the printing of Camp New Hope’s official t-shirts, hosted it’s first kickball tournament to bring awareness to sickle cell disease, sponsored it’s first step-a-thon, conducted outreach visits to sickle cell patients who were hospitalized, provided educational material for multiple events, provided parking passes for sickle cell families at Children’s Hospital of Atlanta. Online profile

Sharon B. Lewis assumed her duties as Executive Director of the Sickle Cell Disease Association of America-Central Alabama Chapter, upon its inception as the Jefferson County Sickle Cell Foundation and Clinic in 1978. Her many years of dedicated leadership have contributed to the development of a statewide sickle cell disease screening program for newborns, an expansive sickle cell trait education and testing program in the Foundation’s the Central Alabama service area, and dramatically increased psychosocial and direct support to individuals and families whose lives are affected by sickle cell disease. Online profile

Teresa Works, LCSW, ACSW is a licensed clinical social worker with twenty five years’ experience in hospital/ behavioral health settings, and a PhD student in social work research at UCONN. She’s currently employed at the New England Sickle Cell Institute at UCONN Health imbedded in a multi-disciplinary clinical / research team providing care to persons with sickle cell disease (SCD). Teresa has presented at the SCD Association of America’s national conference (2014) on the relationship between SCD, trauma and pain. She co-authored the article “Integrating Social Worker into Adult Sickle Cell Clinic Identifies Traumatic Exposure History as a Risk Factor for Chronic Pain” accepted for publication by National Association of Social Workers (NASW) Health and Social Work Journal (1/2016). In May, Teresa presented as part of an expert panel at the 8th Annual Care Coordination Summit “Using Multidisciplinary Interventions and Predictive Modeling for Clinical Challenges and the Medicaid Population”. Online profile

Zulikhat Segunmaru was a patient navigator at Howard University Center for Sickle Cell Disease. She assists in the development and implementation of an Adult Transition Program for Sickle Cell Disease teens and young adults in the DC area. She also assist in writing and implementing the manual of procedures for the Adult Transition Program as well as the Data Management. Online profile

Ade Adeyokunnu manages the day-to-day operations of the community like interacting with members, collaborating with other community members, developing a content strategy to meet the community needs. He also manages and maintains existing social assets (Twitter) and identify opportunities to grow this footprint and leverage to grow community (traffic and engagement). Moreover, he applies business acumen to analyze the community activity and identify any improvement opportunities. Despite the trials of having sickle cell anemia, Ade completed his Bachelors degree in Computer Science and Masters degree in Information Technology. In 2009 he created sikcell.com, the first of its kind social network community for people living with sickle cell. He is currently a full time student at the McCombs School of Business, completing his MBA with a concentration in healthcare and hopes to solve some of the critical healthcare challenges faced by patients. Online profile

Natasha Cook is a dedicated Community Health Worker and Researcher with a keen passion in Public Health Education. Her vast experience includes working on many health initiatives to educate and inform the community. Under her leadership with the Teen Pregnancy Prevention Program, she educated and advised teens on best practices to abstain from sexual behavior, risky behaviors, contraception awareness and she articulated clearly and concisely to the students' several best practices to prevent contracting STD’s. In her role with the Multi-Omic Micorbiome Study Pregnancy Initiative and as an Outreach/Case Manager for the city of Petersburg, Virginia Healthy Start Program, Natasha recruited study participants and collected study information into the organization’s vast data base. In Natasha’s collaboration with the leadership team, she served as a Life Skills Therapist where she assisted with and documented clients' activities of daily living, and documented their behavioral issues. Working with the Adolescent Health Education program, Natasha designed and presented written and oral deliverable training presentations to the community about teen health awareness. In this role she also developed curriculum tailored to suit the needs and maturity of the students. Online profile

Charlotte Flemmings is the founder of Sickle Cycle. She was born in Richmond, VA but raised in Philadelphia, PA. Charlotte Flemmings was diagnosed with Sickle Cell Disease (SCD) at birth. She was never comfortable sharing with others that she was diagnosed with SCD as she never wanted to feel different from normal kids. Charlotte is passionate about helping others understand the disease. She has met so many people who experience more severe crisis and challenges with SCD. Instead of viewing the disease as a burden, she chooses to focus on using her voice as a platform to enhance awareness and advocate for research from a patient's perspective. Online profile

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Forty- three year old Ruth Nankanja is the executive director of the Sickle Cell Association of Uganda, which she founded in 2000 to raise awareness of the condition after suffering stigma as she struggled with the disease. Ruth Nankanja is a sickle cell patient. Ruth soon realized that people would rather sweep sickle cell under the carpet and forget about it. She knew only too well the stigma and discrimination faced by people with sickle cell in Uganda.Once armed with scientific fact as to the cause of sickle cell disease, Ruth Nankanja committed herself and a number of other patients together with several health workers in order to change this state of affairs. Online profile

Ashley is a Co-Founder of Sick Cells and the youngest sibling of her family. Her older brother and Co-Founder of Sick Cells, Marqus Valentine, has sickle cell anemia, Hgb ss. Growing up, Ashley spent much of her childhood charming hospital playroom attendants while Marqus was frequently hospitalized for pain crises, fever, and multiple complications from SCD. As an adult, Ashley completed her Master’s in Research Methods from the University Of Aberdeen, Scotland. She focused on disparities in healthcare for people with SCD in London. After graduate school, she worked with University of Illinois in Chicago’s sickle cell program and later transitioned into policy work in Washington, DC. While working as a policy researcher, Ashley successfully wrote sickle cell disease into part of an $8 million Centers for Medicaid and Medicare Services (CMS) funding opportunity to address disparities for adults in the emergency department. Ashley currently splits her time between working as a sickle cell clinical researcher and building the Sick Cells organization. Online profile