Registration must be received by Monday, October 1st
Please Contact Catherine Kenngott @ cather3@uakron.edu or call (330) 794-6574
Ohio Rett Syndrome Symposium
Dr. Benjamin Katholi, Developmental and Rehabilitation Pediatrics will talk about bones, scoliosis, therapies, bracing, equipment and the Airway clinic.
Dr. Sumit Parikh, Neurogenetics & Neurometabolism, Pediatric Neurology will review Rett genetics and discuss neurologic manifestations of Rett syndrome.
Dr. Kadakkal Radhakrishnan, Pediatric Gastroenterology will discuss eating difficulties, delayed growth, constipation, and G tube placement.
Glenna Greenwald, speech therapist, will discuss the latest technologies for the child with Rett syndrome.
Gary Tonks, Executive Director of the ARC will fill us in on Medicaid, upcoming changes with the Ohio Home Care waivers and state scholarships etc.
Contact Info : Catherine Kenngott
(330) 794-6574
Email :
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Url:http://https://irsf.ejoinme.org/ohrttsymposium
Contact Info : Charity Proffitt
863-430-4932
Email :
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Url:http://strollathon.kintera.org/florida
Sponsorship info: Many but always looking for more! Performance Mobility, Meduri Farms, United Seating & Mobility, Dynavox/Mayer-Johnsons, NuCoast Graphics, Lasko Printing, Naim Hasan Photography, Radio Disney, McDonalds, MyTobii, Prentke-Romich
Contact Info : Joey Razzano
Cell: 503-998-5096
Email :
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Url:http://www.firstgiving.com/rettsyndrome/portlandstrollathon
Coincides with Natural History Study weekend at Children's Hospital Oakland. This is a fun day for families-crafts, vendors, food, face painting, tattoos and a raffle! Prizes for largest team, most raised and best team spirit. Less than 1 mile walk.
Contact Info : Erica Robertson
Email :
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Blue Sky Girls is an international, multi-site, ground breaking annual event designed to increase awareness of Rett Syndrome, a devastating neurological disorder on the Autism Spectrum, affecting 1 in 10,000 girls.
Each year in October the Blue Sky Girls host an event that is celebrated at multiple sites around the world. The purpose of the event is to celebrate Rett Syndrome Month and the strength and will that girls with Rett Syndrome have shown to keep going no matter the odds and 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 asked 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 become a Site Chair, please contact Dr. Sasha Djukic rett@montefiore.org
To register to participate, please contact Jennifer Lopez retted@montefiore.org
To become an Event Sponsor for Blue Sky Girls, please contact Dr. Sasha Djukic rett@montefiore.org
4th Annual Texas Strollathon (12:00PM) Event location: Rob Fleming Park, The Woodlands,
Contact Info : Kenna Seiler
Email :
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The month of October is marked as “Rett Syndrome Awareness Month” all around the world. Indian Rett syndrome Foundation (IRSF) have been organizing the awareness programs for Indian Rett families and healthcare professionals from last four years and these have proved to be great success because of support of Rett Families, Doctors, Scientists and Researchers.
This year IRSF is organizing and sponsoring its 5th Annual Awareness meeting and symposium on “20th October 2012” in association with Department of Pediatrics, All India Institute of Medical Sciences (AIIMS), New Delhi, India. In this meeting, parents will be coming from all parts of India and they will get a chance to connect and interact with each other and share their views/suggestions/queries with each other and with Doctors/Scientists/therapists/healthcare professionals, who will also be taking part in this meeting.
Venue:
Conference Hall, First floor, JLN auditorium building,
Near Central Lawn,
All India Institute of Medical Sciences,
New Delhi-110029
India
Who can Attend:
Parents, Doctors, Scientists, Researchers, Caregivers, Therapists, Relatives, Students
We hope that this year again, the meeting will get your support. So kindly join us for this cause. We are also looking forward for participation of Volunteers and Sponsors for this event. Please do reach us at below mentioned contacts to register for the event.
Tentative Program
Registration: (9 am-9.30 am)
Welcome Address by Organizing Committee:Dr. Madhulika Kabra, Dr. Rajni Khajuria
Introduction of IRSF: Mr. Harsh Malhotra
President’s Address: Mr. Surender Singh
TEA/COFFEE BREAK (10.30am)
PANEL DISCUSSION (11 am - 2.00 pm)
(Panel will include Doctors/Scientists/therapist who will be taking queries asked by the parents)
Talk on Stimulation and Behaviour Needs
Talk on Policy Schemes for special children in India
Vote of Thanks
LUNCH (2 pm -2.30 pm)
THERAPY WORKSHOP FOR PARENTS (2.30 pm - 3.30 pm)
Physiotherapy and Occupational Therapy needs
Speech therapy and Need of Hearing Assessment
INTERACTIVE SESSION (3.30 pm -5.30 pm)
Parents experience about their journey with Rett syndrome
Free wheelchair distribution to needy families
Interaction of parents with IRSF about their problems and needs
TEA/COFFEE (6 pm)
Contact Info : Indian Rett Syndrome Foundation
Email :
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Url:http://www.rettsyndrome.in
Contact Info : Dave Clements
713-410-6076
Email :
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Url:http://http://spendingtimeendingrett.com/
Register now for an IRSF-hosted educational
webinar: “From Mind to Molecules: Neurobiology of RTT”, Presented
by Jennifer Larimore, PhD, Funded Investigator, Agnes
Scott College, on Oct 23, 2012 from 1:00 PM EDT - 2:30 PM EDT
Webinar Description: The brain is the most complex organ in the
human body. When the molecules that regulate how a brain forms do not function
properly, diseases such as Rett Syndrome result. This session will address some
of the basic concepts to better understand the dysfunction occurring in
patients with Rett Syndrome in the whole brain as well as individual brain
cells. While we will walk through some Neurobiology 101 in this webinar, we
will also cover the highlights in the current literature that may bring us
closer to understanding and treating Rett Syndrome.
After registering, you will receive a confirmation email containing information
about joining the webinar.
Contact Info : Henry Perez
561-889-5610
Email :
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Url:http://strollathon.kintera.org/florida
Please join us for a fun night as we reach for a cure for Rett syndrome!
Dinner, DJ, Great Silent Auction, Haunted Hayrides courtesy of the CD Rams Field Hockey Team, Photos by Sherly Z, Cash Bar, Games and "Hall of Monsters"
Costumes strongly encouraged but optional
To purchase tickets by October 22 or to make a tax deductible donation go to
September 2012
Black Out Rett Syndrome Flyer 2012