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.

Please reach out, we are here to help!

Board of Directors Executive Committee

Chelsea Meschke, Michigan
Vice President Family Support
Kristina Sevel, Ohio
Vice President Research
Jonathan Dicks, Ohio
President and Vice President Development
Marybeth Krummenacker, New York
Vice President Education and Awareness
Frank Re, Ohio
Treasurer
Karen Gledhill, New York
Secretary

Directors

  • Hannah Creel, Alabama
  • Carol Hughes, Florida 
  • Frankie McGinnis, Tennessee
  • Gail Potts, South Carolina
  • Heather Rothrock, North Carolina
  • Terri Schleuder, Michigan 
  • Herberth Sigler, New York
  • Cheryl Simoens, Manitoba (Canada)
  • Jen Wyman, Michigan

Executive Director (Board Advisor, non-voting)

Clair Johnstone

CRN Scientific Review Board & Medical Advisory Committee

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

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