Fragile X Syndrome

Who to Contact
Where to Go to Chat with Others
Learn More About It
Web Sites
Search Google for "Fragile X Syndrome"

Who to Contact

FRAXA Research Foundation, Inc.
45 Pleasant St.
Newburyport, MA 01950
(978) 462-1866
Fax: (978) 463-9985
E-mail: info@fraxa.org 
Web: http://www.fraxa.org/

FRAXA was founded in 1994 by three parents of children with Fragile X, Katie Clapp, Michael Tranfaglia MD, and Kathy May, to support scientific research aimed at finding a treatment and a cure for Fragile X. Fragile X research is drastically underfunded, considering its high prevalence, prospects for a cure, and the promise that this research holds for advancing understanding of other disorders like autism, Alzheimer's disease, and X-linked mental retardation.

FRAXA funds grants and fellowships at universities all over the world. We have funded more than $7.5 million dollars in top-notch science. FRAXA's overhead expenses have always been just 9% or less of income, as we have just two paid staff and hundreds of volunteer parents. Since FRAXA was founded, the Fragile X field has grown tremendously, due in large part to our grass-roots efforts. You can help us accomplish much more.
 

The National Fragile X Foundation
PO Box 190488
San Francisco, California 94119 USA
925-938-9300
800-688-8765 (toll-free)
925-938-9315 (fax)
E-mail: NATLFX@FragileX.org
Web: http://www.fragilex.org/ 

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.

The Foundation provides telephone consultation; basic informational packet; medical and genetic services referral; educational advocacy; legislative advocacy;
100 regional service chapters nationally and internationally; family assistance grants; research grants; local, national, and international conference sponsorship;
a newsletter; and educational resources (books, audio, video).
 

Where to Go to Chat with Others

• FRAGILEX
  This listserv covers issues of interest to families, physicians, researchers, and educators, particularly diagnosis and treatment. There is no cure for fragile X, but participators are encouraged to post medical and educational strategies that they have found helpful. The listserv will also discuss the latest medical research aimed at treatment.
   
• Fragile X
  This is an open forum support eGroup for Fragile X Syndrome. It has been established for patients, family, educators and medical professionals interested in sharing information and/or support for persons affected by this rare disorder.
   
• Fragilex
  Discussion list for people interested discussing a potential cure
   
• National Fragile X Foundation Message Board  
  For parents and professionals.
  

Learn More About It

• The ARC's Q & A about Fragile X Syndrome.

• The Online Mendelian Inheritance in Man
   
• Fragile X Syndrome: Diagnostic and Carrier Testing

• Your child and Fragile X syndrome
   

• Facts About Fragile X Syndrome
  National Institute of Child Health and Human Development
   

• Fragile X Syndrome
  eMedicine Article

Web Sites

• FRAXA Research Foundation

• Waisman Center
  Located at the University of Wisconsin-Madison, one of 14 national centers dedicated to the advancement of knowledge about human development and developmental disabilities through research and practice.

• National Fragile X Foundation
   
• Fragile X Society - United Kingdom
   
• Fragile X Research Foundation of Canada
   
• Fragile X Association of Australia

[Family Village Home]
[Library] [Coffee Shop] [Hospital] [Shopping Mall] [Post Office] [Bookstore] [Research]
[Living with Disability] [Disability Culture] [School] [Legal Issues] [Recreation & Leisure] [Family Resources] [Information]