The Rubinstein-Taybi Syndrome Children's Foundation

01/13/2026

Hello RTS Families, We have ongoing research, looking at neurodevelopment in RTS, at Kennedy Krieger Institute in Baltimore, MD sponsored in part by our charity, RTSCF. This research is a step toward clinical trials of treatments that could help improve functional memory, learning, and cognitive ability. Please see the flyer below for details.

They are still in need of individuals with RTS, specifically older than 12, to better understand the RTS cognitive and behavioral profile. We must do this groundwork before we can get to clinical trials.

Dr. Jacqueline Harris is a neurodevelopment pediatrician and neurologist, specializing in rare genetic disorders such as RTS. You can make an appointment to see her when you are at KKI for the research ... and she can answer any and all questions related to RTS.

Our son, Carter, has participated in both stages of the research project, so I would be very happy to answer any questions from the family perspective. To register or ask scheduling or other study-related questions, please email Lauren Meier at Kennedy Krieger at [email protected].

We thank everyone who has already participated or is scheduled to participate ...and anyone who is considering being involved.
Best, Dana Palmer Donnelly & Jeff Donnelly

04/29/2025

A great time was had by all of the RTS families that gathered in Baltimore, Maryland over the weekend of April 25 - 27, 2025.

Thank you to Brenda Bon Levine for continuing to organize this annual meeting that is so greatly valued by everyone! 🥰

RTSCF is proud to help support the event to promote RTS-related research, as well as education amongst families. We'd like to hear of other regional US meetings happening... and see new ones created to bring more families together.

02/15/2025

Hello RTS Families, We have ongoing research, looking at neurodevelopment in RTS, at Kennedy Krieger Institute in Baltimore, MD sponsored in part by our charity, RTSCF. This research is a step toward clinical trials of treatments that could help improve functional memory, learning, and cognitive ability. Please see the flyer below for details.

Also, the Northeast RTS Family Reunion takes place in Baltimore the weekend of Friday, April 25 thru Sunday, April 27. KKI is currently recruiting families who usually attend this event (typically anyone in the Northeast, Mid-Atlantic, and Southeast USA) to schedule their research appointments around the event to make your travel dual-purposed.

Our son, Carter, has participated in both stages of the research project, so I would be very happy to answer any questions from the family perspective. To register or ask scheduling or other study-related questions, please email Lauren Meier at Kennedy Krieger at [email protected].
We thank everyone who has already participated or is scheduled to participate ...and anyone who is considering being involved.
Best, Dana Palmer Donnelly & Jeff Donnelly

01/05/2024

Introducing the RTS Virtual Speaker Series sponsored by Cincinnati Children's, University of Cincinnati, and UCCEDD.

The first session is on Thursday, January 24, 2024 online via Zoom at 7:00 - 8:30pm.

These are free to all attendees, but registration is required. Please see more information at the link provided.

Please join us for a Virtual Speaker Series as we shine a spotlight on professional guest speakers to discuss Rubinstein-Taybi Syndrome (RTS). There will be four sessions spanning across the next four months. All are welcome to attend for free by registering.

03/02/2023

CNBC's Meg Tirrell recognizing Rare Disease Day on the broadcast this week. Guests from NORD and Children's Hospital-Boston highlighted the challenges faced by rare diseases.

“1 in 10 Americans are impacted by a rare disease. Today on National Rare Disease Day, CNBC's NORD CEO Peter Saltonstall and Boston Children's Hospital Dr. Olaf Bodamer join in the discussion on how Corporate America can play their part.”

01/12/2023

The RTS National Conference 2023 is taking place from Wed, June 21 thru Sat, June 24 in Covington, Kentucky in association with the University of Cincinnati Center for Excellence in Developmental Disabilities. Visit the conference website for more details and to REGISTER TODAY!

https://www.ucucedd.org/training-events/rts-national-conference-2023/

01/12/2023

Interested in sharing a photo and your story of living with a rare disease?
See information here about the EURODIS (European Rare Disease organization) Black Pearl Awards bestowed in February as part of Rare Disease Day celebrations.

Less than one month to go!

There is less than one month left to submit your entry to the EURORDIS Photo Award 2023!

Entries close on the 22nd January 2023. Don’t miss out!

⏰ https://cutt.ly/kB8GhIp

06/23/2022

What an inspiration! Meet the first candidate with a disability to qualify for the Miss Georgia scholarship competition -- Kelsey Anastasia Norris, who is living with Rubinstein-Taybi Syndrome and Autism.

She is an impressive young woman. We applaud her civic engagement, work to build acceptance and inclusion for those with disabilities, and her service-oriented dreams for the future.

Read more about her here: http://kelsey-norris.com

CONGRATULATIONS, Kelsey... and mother, Carol! 💕