PUBLISHED
FOR FRIENDS OF CONQUER FRAGILE X FOUNDATION
Fall 2006 Newsletter
NEW STUDY ON STRESS IN FX FAMILIES
Recently, CFXF Scientific Advisor,
Dr. Jonathan Cohen and his
colleagues published the results of a
study entitled "Predictors of stress in
mothers and fathers of children with
fragile X syndrome." the study
reveals that although these families
endure more stress than the average
family, they function very well, particularly in contrast
with families of those with other disabililities. In addition,
the study indicates that fragile X fathers indicated higher
stress levels than mothers. Families can find the entire
report in "Research in Developmental Disabilities 27
(2006) 688-704”, or online at www.sciencedirect.com
Scientific Advisors
Robert Bauchwitz, M.D., Ph.D.
Columbia University
New York, New York
Pietro Chiurazzi, M.D., Ph.D.
University Cattolica
Rome, Italy
Jonathan Cohen, M.D.
Monash University
Melbourne, Australia
Jason Dictenberg, Ph.D.
Yeshiva University
New York, New York
Gideon Dreyfuss, Ph.D.
University of Pennsylvania
Philadelphia, Pennsylvania
Assam EI-Osta, M.D.
The Baker Institute
Melbourne, Australia
Brenda Finucane, M.S.
Elwyn Institute
Elwyn, Pennsylvania
Randi Hagerman, M.D.
University of California at Davis
M.I.N.D. Institute
Davis, California
Prof. Giovanni Neri, M.D.
University Cattolica
Rome, Italy
Allan L. Reiss, M.D.
Stanford University
School of Medicine
Stanford, California
Haruhiko Siomi, Ph.D.
Institute for Genome Research,
University of Tokushima
Tokushima, Japan
Michael Tranfaglia, M.D.
FRAXA Research Foundation
Newburyport, Massachusetts
Karen Usdin, Ph.D.
National Institutes of Health
Bethesda, Maryland
ON THE ROAD WITH FRAGILE X: LESSONS LEARNED FROM
CONSULTATIONS WITH SCHOOL DISTRICTS
Located near Philadelphia, Pennsylvania, Elwyn is a large
nonprofit corporation which provides a wide range of
services for children and adults with special needs. Elwyn’s
office of Genetic Services is a nationally-recognized leader
in genetics research and education, specializing in the
practical implications of genetic disorders in people with
developmental disabilities. Elwyn has provided
educational, vocational, and residential services for over
150 children and adults diagnosed with fragile X
syndrome, and the Executive Director of Genetic Services
is Brenda Finucane, MS, CGC, a long-time CFXF
Scientific Advisor. In addition to working with Elwyn’s
families, Brenda and her colleague, behavior analyst
Barbara Haas-Givler, MEd, BCBA, have traveled the
country providing school consultations for many children
with fragile X syndrome. They have seen students in all
types of school placements, from self-contained special
schools to full inclusion.
In their travels, Brenda and Barbara have found a number
of common “themes”, regardless of the location or type of
placement. First, they note that there is a lot of confusion
on the part of school districts and other agencies in
understanding how fragile X syndrome fits in with other
diagnoses, such as autism and mental retardation, within
the school setting. While they may have heard about fragile
X, school personnel often do not understand how or why
this diagnosis is relevant to a person’s learning style or
behavioral patterns. Getting the word out to special
educators and psychologists about targeted interventions
for fragile X syndrome is a major focus of Elwyn’s work.
Sometimes a lack of understanding translates into
inappropriate placements or an under-estimation of a
student’s true abilities. The news isn’t all gloomy, however.
Brenda and Barbara have encountered many schools which
are doing an excellent job with their students who have
fragile X syndrome. The fact is that most schools have never
heard of fragile X, but this does NOT necessarily mean
they are unable to provide good services. An open mind,
willingness to learn about fragile X, and a creative approach
to meeting a child’s needs are just as important as
experience with the syndrome.
For more information about Elwyn’s consultative and
training services for fragile X syndrome, visit
www.elwyn.org/genetics.html, or contact Brenda Finucane
at brenda_finucane@elwyn.org or 610-891-2313.
Harris Hollin, Founder ~ Karen Fay, Past
President PO Box 37 ~ Walnut Creek, CA 94597 Tel: 925-938-9300 x1 Fax: 925-938-9315 Email:natlfx@fragilex.org Web:www.fragilex.org
NFXF is a not-for-profit tax exempt 501c3 organization Tax ID No 84-0960471
CFXF is a not-for-profit tax
exempt 501c3 organization
Tax ID No 65-0910605
Recently, CFXF Scientific Advisor,
