Leadership

The Cystinosis Research Network is comprised of volunteers representing every aspect of the cystinosis community. Our Board of Directors is made up of parents and individuals with cystinosis who are dedicated to making a difference in the lives of those affected by this disease. Committee volunteers include parents, siblings, individuals with cystinosis, extended family and friends.

Please reach out, we are here to help!

Board of Directors

Kristina Sevel, Ohio

Vice President Research

Chelsea Meschke, Michigan

Vice President Family Support

Jonathan Dicks, Ohio

President and Vice President Development

Marybeth Krummenacker, New York

Vice President Education and Awareness

Tim Wyman, Michigan

Treasurer

Karen Gledhill, New York

Secretary

Executive Director

Clair Johnstone, New Jersey 

Directors

Carol Hughes, Florida 
Megan Morrill, Michigan
Gail Potts, South Carolina
Heather Rothrock, North Carolina
Terri Schleuder, Michigan 
Herberth Sigler, New York
Jen Wyman, Michigan

Adult Leadership Advisory Board (ALAB) Representative

Jana Healy, Minnesota 

Members of the CRN Scientific Review Board and Medical Advisory Committee are world experts in all aspects of cystinosis. Their dedication to this community in invaluable.

Scientific Review Board Chairperson

William A. Gahl, M.D., Ph.D.

Scientific Review Board Chairperson

Scientific Review Board Membership

Roslyn B. Mannon, M.D.

Robert Kleta, MD, PhD, FASN, FACMG

Jess G. Thoene, M.D.

Craig B. Langman, M.D.

Frederick Kaskel, M.D., Ph.D.

Medical Advisory Committee

Galina Nesterova, MD,FABMG

Ranjan Dohil, M.D.

Rachel Bishop, MD, MPH

Paul Goodyer, M.D.

Minnie Sarwal, M.D.

Laurence Greenbaum, M.D., Ph.D.

Julie R. Ingelfinger, M.D.

Ewa Elenberg, M.D.

Doris A. Trauner, M.D.

Donald Cairns, Ph.D.

Corinne Antignac, M.D., Ph.D.

Joshua J Zaritsky, MD, PHD

Professional Advisory Committee

Maya Doyle, MSW, PhD, LCSW-R