News and Events
Parent Gatherings
Every three months the Rett Syndrome Center hosts 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 Parent Gathering events, please click on the following links:
Lesson from Neuroscience: What Went Right in the Brain?
Aleksandra Djukic, MD, PhD
Director, 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 Dean Minsky, LCSW, MS
Curing Rett Syndrome: How Do We Get There?
Monica Coenraads, Executive Director
Rett Syndrome Research Trust
Blue Sky Girls
The Rett Syndrome Center at the Children's Hospital at Montefiore (CHAM) is the proud central organizer of the Blue Sky Girls. This international annual event is designed to increase awareness of Rett syndrome, a devastating neurological disorder on the autism spectrum affecting one in 10,000 girls.
Each year in October the Blue Sky Girls host a stair-climbing event that is celebrated at multiple sites around the world. The purpose of the event is to celebrate Rett Syndrome Month and the strength that girls with Rett syndrome have shown to keep going no matter the difficulties they face every minute of their lives.
Climbing stairs is a symbolic gesture, because climbing takes you upward and forward even if it is difficult. We are completely aware that many girls might not be able to climb stairs, but they can try and then get help. In New York City we ask firemen to help us to bring our girls to the top when they need help.
There will be groups of girls all around the world participating in similar events in their own countries and cities. We would love for you to spread the word and help us get more countries to participate in unison with this worldwide event.
To register to participate, please contact retted@montefiore.org.
To become a Site Chair or an Event Sponsor for Blue Sky Girls, please contact Aleksandra Djukic, MD, at rett@montefiore.org.
Rett at the Met
A collaborative program with the Metropolitan Museum of Art and Rett Syndrome Center, Rett at the Met is led by a specially gifted teaching artist who hosts groups of our families throughout the year. Patients, siblings and their families are given the opportunity to explore art together.
The program also consists of a private "insider" tour of the museum and a specialized art activity.