Currents Events
Past Events
Current Events
Family Social Event – November
1, 2009
Please join us for the
Fragile X Society of Connecticut’s
Family Social Event
Date: Sunday,
November 1st
Time: 12-4pm
Where: The Meeting House
at Traditions
At Historic Southbury, Southbury, CT
RSVP: Marla Wayne at 203-751-1072
or waynemarla@aol.com.
Activities: a musician will entertain, games,
piñata.
Food and beverages will be served.
Feel free to wear a Halloween costume – Sensory
friendly event.
Directions to the Meeting House-
From 84 East –
Exit 14 – merge right off
ramp and go through the traffic lights.
Go straight on Rte 172 for approximately 2 miles.
Turn right into Traditions at Historic Southbury.
Follow Traditions Blvd straight into the development
for a short distance.
The Meeting House will
be on your right. It’s
a red building. Park in the spaces in front of the
building.
From 84 West –
Exit 14 – take a left off
of the ramp.
Go straight on Rte 172 for approximately 2 miles.
Turn right into Traditions at Historic Southbury.
Follow Traditions Blvd straight into the development
for a short distance.
The Meeting House will be
on your right. It’s
a red building. Park in the spaces in front of the
building.
Special Needs Financial Planning Seminar – November
14, 2009
Open to ALL parents or guardians of a special needs child.
Directions
from I-84
Exit 39, right onto Rt. 4 East. Right at the 3rd light into the
UConn Health Center. Follow the signs to the hospital, upper campus/main
entrance. Free parking is in the visitor lots beyond the guard
shack. Enter through the main entrance. Take escalator on left
to lower level.
PAST EVENTS
Fragile X Awareness Day
From the Hartford Courant
Connecticut Governor Rell Declares Fragile X Awareness
Day
Health Notes
Submitted by Andrew Selinger on 2009-09-10.
Governor M. Jodi Rell has signed a proclamation declaring
Sept. 13, 2009 Fragile X Awareness Day in Connecticut. CT State
Senator Jonathan Harris of West Hartford, who was instrumental
in getting the Fragile X Awareness Day bill passed, will be on
hand at the Fragile X Society of Connecticut's second Annual
Conference at UCONN Health Center in Farmington to read the proclamation
and to open the conference. The conference, "Fragile X:
What It Is and Best Practices for the Treatment of Children and
Adults," will be held a day earlier on Saturday, Sept. 12
in celebration of Fragile X Awareness Day.
Fragile X Syndrome is the most common cause of inherited
mental impairment and the only known genetic cause of autism.
Studies have shown that 1 in 130 women and 1 in 800 men are carriers
of the Fragile X permutation. Dr. Randi Hagerman, Medical Director
of the M.I.N.D. Institute at the University of California (http://www.ucdmc.ucdavis.edu/mindinstitute/)
and the foremost authority on Fragile X research, will deliver
two different talks at the conference: "Fragile X: A Family
Affair" and "Fragile X: Targeted Treatments." In
addition, she will conduct Grand Rounds at UCONN Health Center
on Sept. 11 and lead a class for the LEND program's students
and faculty at UCONN.
Dr. Hagerman has more than 20 years of experience in
the field of neurodevelopment disorders and Fragile X-associated
Disorders. Her research resulted in the important discovery of
Fragile X-associated Tremor Ataxia Syndrome (FXTAS), a late-onset
progressive neurological disorder most often affecting male carriers
of Fragile X which is often mistaken for Parkinson's disease.
The Fragile X Society of Connecticut (www.fragilex.org/html/cthome.htm)
spearheaded the legislation for the CT Fragile X Awareness Day
and will host the second Annual Conference. The Fragile X Society
of Connecticut was reestablished in 1995 by Andy and Tammy Selinger
of West Hartford. Both of the Selinger's children have Fragile
X Syndrome.
(http://www.courant.com/community/hc-community-articleresults,0,5942637,results.formprofile?Query=17981HC)
Connecticut’s 2nd Annual Fragile
X Conference – September 2009
“Fragile X: What It Is and Best Practices for
Treatment of Children and Adults”
Dr. Randi Hagerman, Medical Director, M.I.N.D. Institute, UC Davis;
Dr. Andrew Levitas, Medical Director, Division of Prevention and
Treatment of Developmental Disorders at UMDNJ-School of Osteopathic
Medicine; Ms. Sharyn Lincoln, Genetic Counselor and Clinical Coordinator,
Fragile X Program, Children’s Hospital
Boston and Dr. Jonathan Picker, Director of Fragile X Program, Children’s
Hospital Boston.
180 people from 9 states joined together at the University of Connecticut
Health Center in Farmington Connecticut for this one day conference.
Dr. Randi Hagerman, Grand Rounds - September 2009
As part of the Connecticut Fragile X Weekend 9/11 and 9/12,
Dr. Randi Hagerman conducted a Grand Rounds at the UConn Health
Center. The following link will give you the opportunity to see
her presentation.
Title: The Fragile X-Associated Disorders And Targeted Treatments
Date: Friday, September 11, 2009
Time: 8:00 AM EDT
Duration: 1:08:52
Link: http://mediasite.uchc.edu/Mediasite41/Viewer/?peid=d4487409f2dd4f40804abbc298d50741
Please allow time for the video to download and start the presentation...it
may take a few minutes depending on your connection speed.
Description: Dr. Hagerman does have a financial interest/arrangement
or affiliation with Neuropharm & Seaside Therapeutics, Roche and is a consultant
for Novaritis for mGluR5 studies that could be perceived as a real or apparent
conflict of interest in the context of the subject of her presentation. She
will be discussing the use of targeted treatments in Fragile X Syndrome include
mGluR5 antagonists and minocycline and GABA agonists.
Connecticut's 1st Annual Fragile X Conference - September 2008
Hyperarousal, Sensory Integration, and Motor Planning Issues:
Day to Day Strategies for Home, School, and Beyond
Tracy Murnan Stackhouse, MS, OTR and Sarah “Mouse” Scharfenaker,
MA CCC-SLP
In September 2008, Ms. Stackhouse and Ms. Scharfenaker, founders
of “Developmental FX – the Fragile X Development and Resource Centre” in
Denver, Colorado, presented the above topic to 110 professionals and 85 family
members from 6 states joined together at the University of Connecticut Health
Center in Farmington Connecticut for this one day conference.
Pictures from this conference are posted on the gallery
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