The Council

Fernando Andrzejevski, Chairman

Mr. Andrzejevski has a background in business and economics and is pursuing a master’s in healthcare administration. He has over 7 years of healthcare experience working in pharmacy, public policy, non-profit, and pharmaceutical. Fernando was born in Brazil and moved to the United States in 2009. He lives in Berkeley Springs with his wife, Sarah, and their three-year-old son, Lucca, who has severe Hemophilia A. Fernando is an avid West Virginia University sports fan and enjoys traveling.

Christy Glass, Co-Chairwoman

Bio coming soon.

Raymond Brooks

Mr. Brooks is retired as a firefighter for Montgomery County, MD. He is a graduate of Montgomery College and Montgomery County Public Service Training Academy. Raymond has attended Shepherd University. He has worked as both a volunteer and career firefighter/paramedic. Raymond became a nationally registered EMT-Paramedic at age 18, and was licensed in Maryland at the same age. He has been certified in both Advanced Cardiac Life Support and Pediatric Advanced Life Support. He has also been certified in Advanced Trauma Life Support. Raymond is an advocate for and representative of numerous organizations within West Virginia and abroad, which help persons with disabilities and with rare disease diagnosis.

Amy Brown

Bio coming soon.

Erik L. Carlton, DrPH, MS, FACHE

Dr. Carlton is Associate Dean for Professional Programs, Director of Graduate Studies and Associate Professor of Health Policy, Management and Leadership at the West Virginia University School of Public Health. A board-certified healthcare administrator, Dr. Carlton has nearly two decades of leadership experience in both the private and public sectors; and has consulted numerous hospital systems, health departments, and other healthcare organizations and businesses. The author of three leadership books, Erik has a strong presence in global healthcare leadership development, having trained clinical and administrative leaders from nearly 60 countries. .

Jodi Chadwell

Ms. Chadwell is a mother of two from Berkeley County, West Virginia. Jodi’s youngest daughter, Lainey, was diagnosed at 2 weeks of age with Cystic Fibrosis. Both Jodi and her daughter Lainey have been vocal advocates for Cystic Fibrosis awareness doing Cystic Fibrosis talks in numerous local elementary and intermediate schools. Lainey has also appeared on local news a few times trying to bring awareness to people regarding her disease!

Kimberly Earl

Ms. Earl is a caregiver as well as a patient advocate. She resides in Charleston with her husband and four children, each with a variety of rare diseases. She is passionate about quality healthcare and public education for all and advocates for both frequently.

Nadia Falah

Dr. Falah is an assistant professor at the department of Pediatrics, division of Genetics and Metabolism at West Virginia University. Dr. Falah is board certified in Medical Genetics and Genomics and is a fellow at the American Collage of Medical Genetics. .

Juliana Frederick Curry

Ms. Frederick Curry has over 16 years of experience in state and national grassroots organizing, direct lobbying, campaign planning and execution, fundraising and volunteer management. Juliana is currently the chair of the Coalition for a Tobacco-Free West Virginia and serving by Gubernatorial appointment on the West Virginia Tobacco Prevention & Cessation Task Force, Rare Disease and Palliative Care Councils

Sara McGuire

Dr. McGuire is an Assistant Professor of the Department of Pediatrics, Division of Child Neurology at West Virginia University. Sara is a board-certified Child Neurologist currently practicing in the state of West Virginia. She has experience in diagnosing, researching, and treating rare diseases with special focus on neuromuscular diseases.

Kathryn Moffett, MD

Dr. Moffett is professor of pediatrics at West Virginia University School of Medicine, Division Chief of Pediatric Infectious Diseases, and the Director for the Cystic Fibrosis Center of West Virginia University. Dr. Moffett is active in teaching at WVU on a daily basis with medical students, residents, fellows, pharmacy, and nursing students. She has edited and authored numerous articles and book chapters on palliative care, infectious diseases, and Cystic Fibrosis.

Our history

The West Virginia Advisory Council on Rare Diseases was brought to life with the passage of SB 269 in March of the 2020 WV legislative session. West Virginia became the 12th state to sign such a council into law.

The duties of the council are as follows:

The advisory council shall exercise the following duties to the degree that resources are available, including, but not limited to:

(1) Coordinate statewide efforts for the study of the incidence of rare disease within the state;

(2) Act as the advisory board to the secretary and the West Virginia Legislature on research, treatment, and education relating to rare diseases;

(3) Research and identify priorities relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;

(4) Develop, in conjunction and cooperation with the state’s medical schools, policy recommendations relating to the quality of, and access to, treatment and services provided to persons with rare diseases in the state;

(5) Advise, consult, and cooperate with other offices of the department, other agencies of state government, and patient-based organizations in the development of information and programs of benefit to the public and the health care community relating to the diagnosis, treatment, and awareness of rare diseases;

(6) Identify best practices for rare disease care as implemented in other states and at the national level that will improve rare disease care in the state;

(7) Develop recommendations for effective strategies to raise public awareness of rare diseases in the state;

(8) Develop recommendations for best practices for ensuring that health care providers are sufficiently informed of the most effective strategies for recognizing and treating rare disease; and

(9) Report to the Governor, secretary, and West Virginia Legislature not later than January 1, 2021, and annually thereafter on the activities of the advisory council and its findings and recommendations regarding rare disease research and care in West Virginia, including any recommendations for statutory changes and amendments to the structure, organization, and powers and duties of the advisory council. The advisory council shall terminate on January 1, 2023.

The entirety of the WV code regarding the WV ACORD can be found here.