The mission of the Program for Research and Support for Rett Syndrome at Monmouth University is to provide support, education, and treatment services to persons with Rett syndrome and their families. The program also provides a location for professionals, advocates, and students to unite in conducting cutting-edge research and providing communication, speech/language, and swallowing assessment and treatment for persons with RTT. The program was created and is led by experienced faculty and engaged Monmouth University students who are passionate about supporting the Rett syndrome community.
Services at Monmouth University
- Assessments and consultations for speech, language and communication, including augmentative communication services
- Affordable speech and language therapy
- Communication coaching for caregivers and professionals working with person with RTT
- Support services for family members
- Continuing education for professionals, students, and family members
- Develop and conduct faculty- and student-led investigations related to communication, speech, swallowing, and treatment for persons with RTT
- Support groups for families
Cloud Recording – Rett Virtual Workshop
International Clinical Guidelines for the Management of Communication in Individuals with Rett Syndrome is now available
August 20-31, 2022
This online half-day session is designed for both parents and professionals. Theresa Bartolotta is a speech-language pathologist and the co-author of “Rett Syndrome Communication Guidelines”. This session will focus on communication strategies for individuals with Rett syndrome and complex communication disorders. Evidence-based strategies on how to increase interaction and communication potential in this population will be presented. This session will use guided case study videos from speech-language pathologists who work closely with individuals with Rett syndrome. AAC strategies will also be featured. Classroom teachers, speech-language pathologists, occupational therapists, physical therapists, and other educational professionals will learn valuable information that will assist their work with girls with Rett syndrome. Family members will gain valuable insight on communication strategies they can use with their children.
Brittany L. Khan, M.S., CCC-SLP
Coordinator for the Program for Research & Support for Rett Syndrome
MU Rett Syndrome Parent Support Group: Ask Me Anything with AAC Regional Consultants
At this March 31, 2022 event, regional consultants from leading AAC vendors were invited to address any parent/caregiver questions (e.g., how to find device access, what support systems are available).
Learn More About Rett Syndrome
RTT Quick Facts
- There are an estimated 200 persons in NJ living with Rett Syndrome
- RTT occurs in approximately 1 in every 10,000 live female births
- Predominately affects females
- RTT is a clinical diagnosis; most cases have a genetic mutation in the MECP2 gene on the X chromosome
- RTT results in significant challenges in speech and motor control
- Individuals with RTT are typically unaffected at birth. Symptoms usually develop sometime after the first birthday.
- Seizures and scoliosis are common, along with other neurological and physical challenges.
- The third Tuesday in October is NJ’s Rett Syndrome Awareness Day
- Purple is the official color to wear in recognition of Rett Syndrome.
Learn More about the Program for Research and Support for Rett Syndrome