Community Outreach
Parent Gatherings
Every three months the Rett Syndrome Center will be hosting a Parent Gathering. This event is sponsored by the Rett Syndrome Research Trust.
These events offer opportunities for parents:
- To network
- To strengthen relationships between families and experts in an informal setting
- To stay informed about practical topics relevant for their lives (e.g., legal tips, assistive technology, adaptive design, etc.)
- To stay updated on the research progress and learn about the neurobiology of symptoms that may affect their children (osteopenia, role of vitamins and supplements, autonomic dysfunction, sleepiness and alertness, etc.).
These events also offer opportunities for our specialists to learn from parents.
We are aware that the many obstacles, challenges and emotions experienced by families at their IEP meetings and in their daily lives are not described in our medical books. Therefore, Parent Gatherings are an opportunity for parents to teach their children's doctors. We are eager to listen and improve!
In order to help you better, we need to learn from you!
To view additional video presentations from our past Family Gathering events, please click on the following links:
Lesson from Neuroscience: What Went Right in the Brain?
Aleksandra Djukic, MD, PhD
Director of the Rett Syndrome Center
A Reversible Symptom: Osteopenia. The Role of Vitamins and Minerals
Chhavi Agarwal, MD
Rett Center Endocrinologist, IRSF Expert Consultant
Where and How Does Rett Research Happen?
Monica Coenraads, Executive Director
Rett Syndrome Research Trust
Empowering Parents: Speaking Up During the IEP Process! It's Your Right!
Darcy Minsky, LCSW, MS
Curing Rett Syndrome: How Do We Get There?
Monica Coenraads, Executive Director
Rett Syndrome Research Trust
Rethink Education Therapy & Technology (R.E.T.T. Project)
Through education and outreach we hope:
To transform teaching expectations and
To end the perception that those with Rett syndrome cannot learn!
Objective
We would like to gather information to better assess what programs, techniques and settings are most effective for educating individuals with RTT. In addition, we hope that the survey will be useful to identify areas of unmet need.
Goals
- To provide data about strengths and weaknesses of the common educational practices.
- To indicate most urgently needed educational adjustments.
- To develop educational guidelines.
- To stimulate research.
Our hope is to gather as much information as possible to understand the experiences the Rett community has had and to identify where individuals have been effectively served. We are not seeking to critique choices that individuals and families have made.
To view and complete the survey please click on the link below:
http://tinyurl.com/nx5g28
