Tuesday, June 17, 2008

July 22nd, get the word out. Knowledge is power.

Here is a link to a PDF file of the Fragile X Association Newsletter. Read it and learn about Fragile X--it has so much helpful information.

The definition of what Fragile X is is also in this newsletter and I really thought this explanation was better than what I could say so I am going to post it here:

What Is Fragile X? The term “Fragile X” represents a group of hereditary/genetic conditions that have a variety of impacts on affected individuals and their families. The conditions include: Fragile X syndrome (FXS)—Caused by the full mutationof the Fragile X gene, FXS is the most common cause of genetically-inherited mental impairment. Its effects range from subtle learning disabilities to severe mental retardation and autism, though affected individuals can also demonstrate normal IQ. Symptoms often include unique physical characteristics, behavioral deļ¬cits and delays in speech and language development.

Fragile X-associated tremor/ataxia syndrome (FXTAS)—A condition affecting some male (and in rare cases, female) carriers of the premutation over age 50, causing balance, tremor and memory problems.

Fragile X-associated premature ovarian failure (POF). A condition causing menopause-like symptoms in some female carriers of the premutation.

Fragile X can be passed on in a family by individuals with no apparent sign of the condition. It occurs in some families over decades, affecting multiple generations, while in others, it may cause problems in only one person. Since 1984, The National Fragile X Foundation (NFXF) has been helping individuals with Fragile X, their families, and the professionals who work with them. As research into Fragile X continues, our understanding of who it affects and how it affects them will grow.

The NFXF is committed
to supporting all efforts that will keep the Fragile X community well-informed about research, education, and treatment for these conditions.

PO Box 190488
San Francisco, California 94119-0488
Phone: (925) 938-9300
Toll free: (800) 688-8765
Fax: (925) 938-9315
Email: NATLFX@FragileX.org

Web: www.FragileX.org

2 remarks:

Ethington Family said...

Rachael, that is wonderful!

oh, you have been tagged.
sorry, but you know how it goes. you have to ready my blog to see what i mean.

brookiebaby said...

I'm stealing this post for my blog - hope you dont' mind! I want to help get word out! :) Thanks for all you do!!!!