The Rothmund-Thomson Syndrome Foundation is a 501(c)(3) nonprofit organization. It was incorporated in November, 2009 by the Kimmel Family after the loss of their daughter Victoria who had RTS. Currently, we operate with nine volunteer board members who raise money to support the Foundation's goals.


- Promote awareness of RTS and related syndromes to the general public and to healthcare professionals

- Provide education and support to affected families worldwide

- Provide education to healthcare professionals who may encounter patients affected with these disorders

- Promote research aimed at understanding the molecular basis of RTS and the clinical manifestations


Board of Directors for the RTS Foundation is as follows:

- John Kimmel - Chairman

- Laurie Sperou - Vice-Chairman

- Shelley Sanders - Treasurer

- Ta-Tara Rideau - Secretary

- Dr. Emil Zakutny

- Sheila Townsend


Mailing Address

Rothmund-Thomson Syndrome Foundation

4307 Woodward Court

Chantilly, VA 20151

Email us at