Spring 2023 Edition Click here to download
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: email@example.com 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 firstname.lastname@example.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
Home2 Suites by Hilton Portland Airport
50 Maine Mall Road
South Portland, ME 04106
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.
Spring 2023 Edition Click here to download
Winter 2022 Edition Click here to download
Fall 2022 Edition Click here to download
1 August - Dr. Lisa Wang, RTS History and Status of Research (click to see the slides)
19 September - Dr. Emil Zakutny, Resiliency During the Pandemic (click to see the slides)
10 October -Dr. Levy, Management of Dermatologic Issues in Rothmund-Thomson Syndrome (click to see the slides)
21 November - Dr. Wang discusses the characteristics and differences of Type 1 and Type 2 RTS (click to see the slides)
19 December - Dr. Wang discusses Cancers prevalent to RTS and treatment strategies. (click to see the slides)
Click here to read a article from Emil Zakutny, D.S.W., LCSW, LMFT, about coping with chromic illness in the family.
Read a letter from the RTSF Chairman and hear patients sharing their stories.
Courage. Kindness. Friendship. Character. These are the qualities that define us as human beings, and propel us, on occasion, to greatness. Meet some of the patients and you will find out how they are making life that much better. Click on their photos to learn more.
Meet Lucy Hanson, four years old from Westbrook, Maine. Lucy’s journey towards an RTS diagnosis started.....
We have two beautiful daughters Brianna now 7 years old & Zoey 2 years old. They were both born with Rothmund-Thomson Syndrome.....
My daughter, Shauna, is 2 years old. She was born at 6 lbs 13 ozs. At birth she failed her hearing screening and at 1 month old we learned that she had hearing loss in both ears. Shauna has worn a hearing aid since 3 months of age....
This is John Michael Moore. He is now 26. When he was born he had problems right from the start. He was admitted to our local hospital at two weeks old....
The Rothmund-Thomson Syndrome Place, better known as the RTS Place, can trace it's origin back to May 2002, when a then 19 year old Victoria Kimmel reached out to Dr. Lisa Wang at the Texas Children's Cancer Center, with the following email...
When she's born, a genetic doctor told us she has Baller Gerold Syndrome. She had a craniosynostosis and no thumbs. At 6 months she began a skin problem. During the first year we searched to find what out was going on with her and finally a dermatologist told us it was a genetic problem....
Our story began in London England , May 1999, when after a period of infertility suddenly Binu my darling wife became pregnant again with our second child after some six or so years of trying. We were over the moon...