An Update on Medical, Educational and Research Issues for Parents & Professionals
Date: Monday February 13, 2012 11:00am-5:00pm
Location: UMDNJ, Clinical Academic Building, French St, New Brunswick, NJ
This all-day session, featuring nationally known experts in Rett syndrome, is designed for both parents and professionals. Speakers will describe recent developments in research and provide an update on issues related to lifespan, prognosis, along with information on related medical conditions common in girls with Rett syndrome. Sessions on communication and literacy will discuss evidence-based strategies on how to increase interaction and communication potential in this population. Classroom teachers, speech-language pathologists, occupational therapists, physical therapists, and other educational and medical specialists will learn valuable information that will assist their work with girls with Rett syndrome. Family members will gain valuable insight on strategies they can use with their girls, and can share with professionals who help care for their daughters.A light lunch will be provided and Continueing Education Units available for professionals.
Rett Family Fun Day at Blue Claws Stadium, Lakewood
Games, Food and Fun for all
Hoboken PBA Tricky Tray and Comedy Night
Hoboken PBA, with the help of Sgt. Melissa Gigante and PBA President Vincent Lombardi presented $8,000.00 they raised at the Hoboken PBA Tricky Tray and Comedy Night to NJRSA at the 20th Anniversary Silent Angels Gala on March 10, 2012. This brings the total the PBA had donated to NJRSA to $40,000.00.
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NJRSA is hosing the 4th Annual Drive for the Cure to benefit the International Rett Syndrome Foundation Research Fund
Pictures from our First Annual Golf Outing Aug. 31, 2010 at the Upper Montclair Country Club
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"DRIVING TOWARD THE CURE"
First Annual New Jersey Rett Syndrome Charity Golf Outing
Monday, August 30, 2010
Thanks to everyone for a making our first golf outing such a great event. Special thanks to some of our sponsors, Joe Heidt Motors, Ramsey NJ Salerno Duane Infiniti, Denville, NJ Law Office of John A. Amari, Freehold, NJ ASCO Power Technologies, Florham Park, NJ Ruprecht, Hart & Weeks, LLP, Millburn, NJ
ANNUAL RETT WALK/STROLL
Annual October Event- Oct. 6, 2013 NEW LOCATION---Maxwell Park, 1 Eleventh Av. Hoboken!
We are asking you on behalf of our daughter Heather as well as all the girls who can not speak for themselves,to please help us recognize New Jersey Rett Syndrome Awareness Day on October 16, 2012, by wearing something purple.
This holiday season, help raise money for New Jersey Rett Syndrome Association through your everyday purchases at brand name stores such as Target, Barnes & Nobles, Overstock and Macys. In addition, you'll save money with exclusive coupons, free shipping offers, and limited-time sales.
Our next event is sponsored by the Hoboken Police PBA. Comedy night 2009, Sat. Oct 17, at the Our Lady of Grace Bingo Hall, 100 Willow Ave. Hoboken.
Tickets are $30.00 per person which includes a buffett dinner and are only available by contacting Melissa Gigante 201-341-7149. They will NOT be available at the door! Make checks payable to Hoboken PBA/TrickyTray. Last year the PBA donated $11,000.00 to NJRSA. Let's show them our thanks by supporting their event.
RETT FAMILY RETTREAT - 4/20/2013!
Join us for a fun, casual day with friends! Saturday April 20, 2013, 2-6pm at Embassy Suites , Piscataway NJ. There will be a short program to update reseach; Elaine Williams, speech theapist at the Montefiore Rett Syndrome Center will share communication ideas and David Goldberg from Tobii ATI will demonstrate the Tobii eye gaze computer and give folks a chance to try it out. After the program, it's time to just relax together, have dinner and then if you would like to stay for the night we'll be hitting the indoor pool! Its a great time to share the good and bad, trade ideas, and let the siblings meet each other to see they are not alone! Program and and Buffett dinner only $25.00 per person. Children under 13 free. Come for the afternoon, stay for the night! Room rate at Embassy Suites $125.00 for family of 4, includes family size suite, happy hour snacks and cooked to order breakfast. visit www.embassysuites.com or call 732-980-0500. Mention Rett syndrome group for discounted price.
to register go http://njrett2013.eventbrite.com
Watch for more details, coming soon!!
IRSF NATURAL HISTORY FAMILY CLINICS, FEBRUARY & AUGUST
IRSF Natural History of Rett Syndrome Clinic, LAST NJ site visit date:
Saturday and Sunday, February 8 - 9, 2014
The purpose of this natural history study is to establish a phenotype-genotype correlation over a broad spectrum of Rett syndrome phenotypes including the longitudinal pattern of progression of clinical features, quality of life, and longevity across this cohort.
Join us for a special thank you to these amazing teams on Sat. Feb 8, 2014. More details to follow.
Target Enrollment: 1,000 individuals fulfilling consensus clinical criteria for Classic or Variant Rett Syndrome or individuals with MECP2 mutations who do not meet the clinical criteria. All ages will be eligible. Patients must be able to travel to study sites for annual evaluations (for those 6 years or older) or bi-annual evaluation (for those through age 5).