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
Adult Patient Representative
Cheryl Simoens, Manitoba
DIRECTORS
Andrea Carr, New York
Carol Hughes, Florida
John Maccarone, New York
Jennifer Loglisci, Massachusetts
Larry Thomas, New York
Anna Pruitt, Colorado
Gail Potts, South Carolina
Herberth Siegler, New York
Kirsten Stilke, Wisconsin
Melanie Vachon, Kansas
Tim Wyman, Michigan
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

Scientific Review Board Membership





Medical Advisory Committee













Professional Advisory Committee
