Dr. Andrew Campell

Dir, Comprehensive Sickle Cell Disease Program Children’s National Hospital, Washington, DC

Dr. Campbell is a graduate of Morehouse College and Case Western Reserve School of Medicine. He completed his pediatric residency training at the Harvard affiliated Massachusetts General Hospital. Currently, he is the Director of the Comprehensive Sickle Cell Disease(SCD) Program at Children’s National Hospital (CNH).. He has led CNH’s approaches to workforce diversity, health equity and inclusion. Dr. Campbell is an Associate Professor of Pediatrics at George Washington University and a Faculty Affiliate at the George Mason University. As an international expert, has lectured regionally, nationally, and globally on issues related to the care and healthcare system approach to patients and families dealing with the effects of SCD. He has participated in numerous advocacy efforts for SCD patients and their families which included assisting with Sickle Cell Disease legislation (Sickle Cell Disease Treatment Centers Act of 2022 and the Sickle Cell Care Expansion Act of 2022), presenting at the 2018 Congressional Briefing (US Capitol) on Sickle Cell Disease Funding, and presenting at a White House Sickle Cell Awareness meeting. Dr. Campbell is currently the Principal Investigator of the American Society of Hematology Research Collaborative, “Washington DC, Maryland, Virginia (DMV) Sickle Cell Clinical Trials Network”. For the past several years he has focused his research on the clinical complexity of Sickle Cell Disease (SCD) in different populations through a multinational international.

Dr. Titilope Fasipe

Co-Dir, Sickle Cell & Thalassemia Program, Texas Children’s; Assistant Professor, Baylor College of Medicine

Dr. Titilope Fasipe's goals are shaped by her desire to help children facing the hardships of a blood disorder. She is intrigued by the clinical challenges of non-malignant hematologic diseases, where in particular, patients with sickle cell disease continue to have significant co-morbid complications and decreased lifespan. Furthermore, she has long been passionate about the psychosocial barriers to care experienced by children with sickle cell, especially during the transitional years. In addition to Dr. Fasipe's academic role, she is actively involved in various sickle cell-focused community efforts targeted at understanding these challenges. At the state level, she was appointed to the first Texas Sickle Cell Advisory Committee (2016-2018) by the Executive Commissioner of the Texas Health and Human Services. At the local level, she is the current chair of the Houston Sickle Cell Collaborative - a joint effort between the Houston Health Department and organizations vested in sickle cell disease. She is board certified by the Texas State Board of Medical Examiners and the American Board of Pediatrics in both pediatrics and pediatric hematology.

Georgene Glass

Executive Director, Dreamsickle Kids Foundation, Inc

Georgene’ “ Gina” Glass is the founder and Executive Director of Dreamsickle Kids Foundation, Inc, the first sickle cell disease (SCD) organization in the state of Nevada, founded in 2018. Gina is the mother of two,and her youngest daughter has SCD. Georgene’ has worked extensively in state issues, including coordinating support for AB254, which passed in Nevada in June of 2019. Gina also serves as Vice Chair of the Nevada Rare Disease Advisory Council. In 2020, Gina authored The Tale of the Cell, a children’s book about SCD starring her Warrior Gia to provide an engaging and informative look into SCD. Georgene’ is a certified Community Health Worker, which allows her to provide support to patients, linking them to community resources and providing support in navigating SCD outside of the medical setting. Georgene facilitates SCD talks with nursing, medical, and public health students at local colleges and universities. Georgene’s goal in leading Dreamsickle Kids is to provide support to patients like Gia and caregivers like her and make long term impactful changes in Nevada to address the health disparities experienced by people with SCD.

Stephanie Kaplan

Deputy Dir, Gov Relations and Public Health, American Society of Hematology

Stephanie Kaplan is the Deputy Director of Government Relations and Public Health at the American Society of Hematology (ASH). ASH represents more than 18,000 hematologists and research scientists worldwide who are working to conquer blood diseases. Stephanie leads the development of ASH’s priorities, policies and programs focused on public health issues and oversees ASH’s engagement with federal partners. This includes leading ASH’s sickle cell focused policy and advocacy-related activities. In her former role at ASH, Stephanie provided oversight to the Society’s multifaceted initiative to address the burden of sickle cell disease (SCD) in the United States and globally. Stephanie led the formation of the Sickle Cell Disease Coalition (SCDC) in 2016, a group of over 100 national and global organizations focused on amplifying the voice of the SCD stakeholder community, promoting awareness, and improving outcomes for individuals with SCD.

Andy Lord

Founder, Georgia Capitol Solutions Inc

Andy began his lobbying career as the Director of Government Relations for the American Cancer Society in 2001. In 2006 he formed his own lobbying firm, Georgia Capitol Solutions, to work exclusively with non-profit organizations in Georgia. His firm represents twelve organizations in Georgia and specializes in state legislation in the arenas of health care, education, insurance and appropriations-related policy. Andy and his children all have sickle cell trait, which led him to volunteering for the Sickle Cell Foundation of Georgia before officially becoming their lobbyist in 2017. As the lobbyist for The Sickle Cell Foundation of Georgia he has worked on issues such as sickle cell appropriations equity, increased Medicaid coverage, revenue policy, medicinal marijuana and more. To date, the Foundation has secured nearly $2 million per year in state appropriations for the Foundation, added sickle cell to the approved list for medical cannabis, increased revenue for state university research and education on sickle cell, established a sickle cell specialty license plate and more. He is an Atlanta native and lives with his wife and three kids in Old Fourth Ward, Atlanta.

Dr. Julie Kanter

(Panel Advisor) Director of the Adult Sickle Cell Program & Assoc Professor of Hem/Onc at the U of Alabama - Birmingham

Julie Kanter, MD, is an Associate Professor of Hematology/Oncology and the Director of the Adult Sickle Cell Program at the University of Alabama at Birmingham. She is a lifespan hematologist specializing in sickle cell disease. Her research is focused on improving access to care through dissemination and implementation and in the development of novel therapies to improve SCD outcomes. She works closely with national and international partners on advocacy and research and is currently the president of the National Alliance of Sickle Cell Centers. Dr. Kanter has received NHLBI, HRSA and CDC funding hoping to improve quality of care and access to care for affected individuals.

Emma Andelson

Senior Program Manager

Emma Andelson is the Senior Program Manager, Government Affairs and External Relations for Sick Cells. As the Senior Program Manager, she is able to use her background in Media & Cultural Studies to create new and creative social media campaigns to reach diverse audiences. She also assists in continuing to grow Sick Cells’ government affairs and policy outreach initiatives. Emma completed a Master’s in Public Administration at the University of Illinois – Chicago with a concentration in educational policy.

John Otsuki

Government Relations Manager

Mr. Otsuki is the Government Relations Manager at the Sickle Cell Disease Association of America (SCDAA). Mr. Otsuki brings experience in regulatory and legislative affairs, government relations and strategic planning to assist the SCD community.

Ashley Valentine

President & Co-Founder, Sick Cells

Ashley is a Co-Founder and the President of Sick Cells, and the youngest sibling of her family. Her older brother and Co-Founder of Sick Cells, Marqus Valentine, had sickle cell anemia, Hgb ss. 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. In 2016, Ashley moved from policy research to clinical research at Children’s National Medical Center where she got a deeper understanding of clinical trials and clinical development for SCD. Ashley became the President of Sick Cells in 2017. She was able to transition into a full-time role in 2018. Since then, Ashley and her brother have achieved great milestones with the SCD community including successfully leading the SCD community in its first-ever ICER review, building coalitions to advocate for federal legislation to be signed into law, testify at the FDA about the importance of drug development, and more.

Lakiea Bailey

Executive Director, Sickle Cell Consortium

Dr. Lakiea Bailey is a sickle cell disease advocate, educator and research scientist. Diagnosed with sickle cell disease at age three, she has become a passionate advocate for those living with rare diseases and is committed to serving as a voice of encouragement and empowerment within the sickle cell community. Despite the devastating symptoms of sickle cell, Dr. Bailey was determined to complete her educational goals, earning a Bachelor degree in Biochemistry and Molecular Biology in 2001 and a Doctorate degree in Molecular Hematology and Regenerative Medicine in 2012. During the course of her education, Dr. Bailey was named a Southern Regional Education Board (SREB) Doctoral Scholar, was the recipient of multiple honors and awards, including the Fisher Scientific Award for Overall Excellence in Biomedical Research, the Medical College of Georgia Alumni Association Award, the Georgia Reagents University Leadership Award and was inducted in the Alpha Upsilon Phi honor society. She believes that through hard work, diligence, patience and faith, even the seemingly most impossible obstacles can be overcome.

Marjorie Dejoie-Brewer

Medical Director & Strategist, Global Medical Affairs, Vertex Pharmaceuticals

Dr. Marjorie Dejoie Brewer is the owner of MAD Fit, a medical consulting and Wellness & Health business and currently holds the position of Medical Director of hemoglobinopathies in Global Medical Affairs and Global Strategist at Vertex Pharmaceuticals. She is also the Medical Director for the Sickle Cell Association of Delaware, in addition to many other roles in the community. Herself a patient of Sickle Cell Disease (SCD), Dr. Dejoie is a firm proponent and practitioner of comprehensive and preventative health and wellness planning. This became the mission behind her consulting firm “M.A.D. fit" established in 2002. Building on this foundation, Dr. Dejoie opened a wellness center, “Bonne Santé” in the fall of 2003, dedicating herself to making this world a better place by making it healthier, one person at a time.