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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
Karen Gledhill, New York

Executive Director

Clair Johnstone, New Jersey 


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
Patrick Gipson, M.D.
Ranjan Dohil, M.D.
Rachel Bishop, MD, MPH
Paul Goodyer, M.D.
Minnie Sarwal, M.D.
Mihir M. Thacker, 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