Other Sites & Related Links
DNA Learning
Center
This is a multimedia guide to increase your understanding
of the cause, treatment, and experience of FXS.
Fragile X
Association of Southern California
Promote public awareness of Fragile X syndrome
with special emphasis on educators and health professionals; provides
a forum for families of children with Fragile X to meet and share
their ideas, concerns and problems; and supports scientific research
on Fragile X syndrome.
Fraxa Research
Foundation
FRAXA is a national, nonprofit organization run
by parents and medical professionals. In 1994, three parents of children
with fragile X syndrome founded FRAXA because fragile X research is
drastically underfunded. FRAXA funds medical research aimed at finding
a specific treatment for fragile X.
- Family
and Professionals Listserve:
The FX listserve is a free electronic mailing list sponsored by FRAXA
and Emory University for a wide range of discussion topics.
- Fragile X Investigators Forum: This listserve
provides a forum for investigators to share findings and generate
discussion related to research in FXS.
Information
about IDEA-Parent Training Centers
To ensure that all children with disabilities
have available to them a free appropriate public education that emphasizes
special education and related services designed to meet their unique
needs and prepare them for employment and independent living.
Kaplan Publishing
Company
Kaplan is one of the nation's premier educational
companies offering K-12 after-school programs, customized education
services for schools, universities and businesses, books, software
and online services.
Kaplan Publishes QuickNotes: Inclusion
Resources for Early Childhood Professionals
QuickNotes is a 10-module set of information
sheets covering a broad range of topics related to quality child care
in a variety of settings including public and private child care and
preschool programs, family child care, and developmental day programs.
M.I.N.D.
Institute
The M.I.N.D. Institute is an interdisciplinary institute
dedicated to conducting research and providing clinical programs that
focus on neurodevelopmental disorders. Their vision is to become a
national resource for the study and treatment of neurodevelopmental
disorders, including FXS. Leading scientists, physicians, and educators
in the fields as diverse as molecular genetics and clinical pediatrics
have joined together to better understand behavior, development, and
the brain function.
Parent
Training and Information Centers
Parent centers in each state provide training
and information to parents of infants, toddlers, school-aged children,
and young adults with disabilities and the professionals who work
with their families.
Another good resource for parents is the Family
and Advocates Partnership for Education, and their site can be found
at http://www.fape.org.
Partnerships
for Inclusion
PFI is a statewide technical assistance project
with offices in the western, central, and eastern regions of North
Carolina. Administratively housed at the Frank Porter Child Development
Center at UNC-Chapel Hill, PFI provides technical assistance to support
the inclusion of young children with disabilities, ages birth through
five, in community programs.
TEACCH
To enable individuals with autism to function
as meaningfully and as independently as possible in the community,
and to provide exemplary services throughout North Carolina to individuals
with autism and their families and those who serve and support them.
The National Fragile
X Foundation
The National Fragile X Foundation was founded
in 1984 to provide support for families impacted by fragile X, and
for the educators, therapists, and doctors who work with them. It's
website contains over 1200 pages of content.
MISSION STATEMENT OF THE NFXF. The
National Fragile X Foundation unites the fragile X community to Enrich
lives through educational and emotional support, Promote public and
professional awareness, and Advance research toward improved treatments
and a cure for fragile X syndrome.
The National Fragile X Foundation sponsers a biannual
international conference for families, scientists, educators, therapists
and medical staff. To learn more about the next international conference,
as well as the many other services and resources the NFXF offers,
please visit the website at www.FragileX.org or call 1-800-688-8765.
The
Northern California Fragile X Web Site
This organization was formed to promote public awareness
of Fragile X Syndrome with special emphasis on educators and health
professionals. Also, to provide a forum for families of children with
Fragile X to meet and share their ideas, concerns, and problems; and
to support scientific research on Fragile X Syndrome.
The Arc
This national organization provides a wide-range of
information and support to individuals with disabilities and their
families.
Books and Pamphlets
The Fragile X Child (1992)
B.B. Schopmeyer & F. Lowe
$39.95 plus $5.25 shipping
Singular Publishing
Group, 4284 41st St.
San Diego, CA 92105-1197
1-800-521-8545
Educating Boys with Fragile X Syndrome (1994)
C.A. Spiridigliozzi, A.M. Lachiewica, C.S. MacMurdo, A.D. Vizoso,
S.M. O'Donnell, A. McConkie-Rosell, & D.J. Burgess
$10 (checks to DUMC)
Gail Spiridigliozzi, Child Development
Unit Box 3364, Duke University
Medical Center, Durham, NC 27710
919-684-5513
Behavior and Development in Fragile X Syndrome
(1994)
E.M. Dykens, R.M. Hodapp, & J.F. Leckman
Sage Publications
2455 Teller Road
Thousand Oaks, CA 91320
A Medication Guide for Fragile X
Michael R. Tranfaglia
$25
FRAXA Research Foundation
P.O. Box 935
West Newbury, MA 01985
978-462-1866
email: info@fraxa.org
Fragile X Syndrome: Diagnosis, Treatment, and Research
(2nd edition, 1996)
R.J. Hagerman & A. Cronister
$35
Johns Hopkins University Press
2715 N. Charles Street
Baltimore, MD 21218-4319
410-516-6956
Fragile: Handle with Care; Understanding Fragile X
Syndrome (1996)
M. Braden
$25
Avanta Publishing Company
75 South Elliot Street
PO Box 17023
Chapel Hill, NC 27514
919-967-0322
Children with fragile X syndrome: A Parent's Guide
(2000)
J. D. Weber
$17.95
Woodbine House
6510 Bells Mill Road
Bethesda, MD 20817
800-843-7323 |
