The RTS Foundation

Connecting Families

Funding Research

Rothmund-Thomson Syndrome (RTS) is a rare genetic disorder that can affect people of all races and nationalities. Symptoms often first appear during infancy, usually between three and six months of age, in the form of a skin rash on the cheeks. Patients can have just a few or several features of the syndrome.

The Mission of the Rothmund-Thomson Syndrome Foundation is to foster worldwide awareness and education about RTS and related disorders and to encourage research through support of scientists and physicians devoted to studying the clinical spectrum, molecular and cellular basis of RECQL4 and related syndromes

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 six volunteer board members who raise money to support the Foundation's goals.

Download the RTS Informational Brochure.

New study being conducted by a high school student in the Gifted and Talented Mentorship Program in Fort Bend ISD in Texas. She is being mentored by Dr. Wang and will determine the rate of hearing loss and skin cancers in RTS, topics that have not been formally studied before. In order to accomplish this, she will be sending out questionnaires/surveys to all families enrolled in our research study at BCM and populating the RTS Registry.

Because this is only a 4-month project, we need you to respond quickly. We encourage all RTS families to please respond as soon as you receive the survey. It will only take a few minutes of your time but will be so important for the RTS community. Surveys will be sent out both by mail and electronic link. If you have not been in contact with Dr. Wang’s group recently, please reach out to them at: tlrideau@texaschildrens.org or 832-824-4224 to make sure they have your contact information.

The RTS Sharing and Caring Conference is a wonderful opportunity to connect with RTS families for either the first time or to reacquaint yourself with families that you may not have seen for some time, given the Covid19 Pandemic. While the itinerary for the conference continues to be finalized, presentations will address, among other topics, the status of research, medical and clinical challenges of RTS, management of dermatological concerns and the psychosocial aspects of living with RTS and its impact on the family. As in prior years, all attendees can participate in the Sharing and Caring part of the conference. This is a unique opportunity for families to share their lived RTS experiences, provide feedback and find mutual support.

Due to the limited accommodations at the Home2 Suites Hotel in Maine, please contact us via support@rtsplace.org as soon as possible, if you are interested in attending the conference. We look forward to seeing you at the conference

Pertinent information about the 2023 RTS conference

Location
Home2 Suites by Hilton Portland Airport
50 Maine Mall Road
South Portland, ME 04106
Phone: 207-517-3636

Dates:
Friday April 28 to Sunday April 30, 2023
Friday - 4/28 5pm - 8pm Welcome mixer for all conference attendees
Saturday - 4/29 8am - 5pm Full day conference with lunch break
Sunday - 4/30 8am - 11am Presentation with conference ending remarks

We look forward to seeing you at the conference.