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
SAVE THE DATE!
in West Long Branch, NJ is proud to announce the 2019 Annual Conference:
Communication and Literacy for Individuals with Complex Communication Needs
Thursday, October 24 and Friday, October 25, 2019
West Long Branch, New Jersey
Pati King-DeBaun, MS, CCC-SLP
Pati is a speech-language pathologist who has specialized in communication and early literacy for children with complex disabilities for over 30 years. She is a highly regarded consultant, author, and international speaker. Pati will conduct two workshops.
Thursday, October 24
This workshop is appropriate for students from Toddler-K who are at the early literacy levels and struggle with communication and language. Case examples will demonstrate support strategies for children with autism, multiple disabilities, AAC users and students who have severe language delays. Appropriate for students at home, inclusion or self-contained- situations. Case examples, hands on materials and a sample story to take home and use will be a part of this workshop.
Friday, October 25
This workshop is for anyone interested in improving the quality of instruction available to school age students who use alternative and augmentative communication (AAC) with a range of student ability levels and devices, (light to high-tech). Too often in therapy or educational programs designed for children who use AAC systems the skills (linguistic, literacy and social) are taught in isolation rather than in an integrated manner. This presentation will demonstrate how to find the balance between social relationships, conversation, core word instruction/generative language and participation in the classroom and therapy programs. Some favorite tools and solutions will be shared with participants.
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.