Rubinstein-Taybi was first described in 1963 by Dr. Jack Rubinstein and Dr. Hooshang Taybi.
A group of parents in the Cincinnati region have been working to help Cincinnati Children’s Hospital continue to focus on RTS. Since Dr. Rubinstein’s passing, the Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s has made the commitment to continue to maintain an RTS program and they have given Dr. David Schor the duty of heading up that program. Through working with him and his staff, we have been able to move some things forward such as the recent dissemination of the 2003 RTS Conference Proceedings (aka The Brown Book) and we have discussed other ways the program can continue to be relevant without Dr. Rubinstein leading it.
I am pleased to be writing this message today to introduce to you another resource that Cincinnati has put forward. Amy Clawson is a Family Coordinator for the Division and they have graciously decided to give her special duties regarding The RTS Program. She will work on the local level to assist us in our efforts to maintain a parents group, offer local family group meetings, etc. She does this for many different family groups in our area. However, in regards to RTS, she is also going to work to coordinate certain efforts on behalf of the national/international RTS community. For example, she is taking over the role of distributing the conference proceedings (please contact Amy at [email protected] if you are interested in receiving one).
Amy can also field questions that families may have regarding RTS resources, support, and information. If someone wishes to set up an appt at DDBP, they can call 513-636-4611. As time goes on, she will also work closely with Dr. Schor to get out information regarding the Cincinnati program and other RTS goings on around the world. She will also, and very importantly, help us keep the Cincinnati Program focused on RTS which I certainly feel is a necessity.
I am including a link that talks a little about Amy as a person and about her role as a family-centered care advocate. If you click on the link, you will see that Amy is “one of us”. Her son Timmy has CP so she definitely “gets it”. In the short time I have known Amy, I have found her to be very passionate about families getting what they need from the medical community.
Amy has decided to join the RTS list serve and is welcoming feedback from folks on how the Cincinnati program can help the RTS community. Please be kind and patient….her role with us is only part of her already part time position, but she is excited by this opportunity. As I said, she is on the list serve now and I am sure she will send a Hello message, but I wanted to give everyone a heads up about this new contact in Cincinnati who will be a starting point for anyone interested in the program there. Please welcome Amy when you have time! Below is her contact information, but just for the record, I believe she is on vacation this week.
Amy B. Clawson
Family Coordinator, Outreach
Developmental and Behavioral Pediatrics
MLC 9500, 3333 Burnet Avenue
Cincinnati, OH 45229-3039
Email: [email protected]
Bill Mann/dad to Sophie/ rts/ 11