What Is Our Mission?
To financially assist organizations that focus on improving the lives of those with Fragile X syndrome. This assistance is intended to improve the treatment, advocacy, education and research for those with Fragile X syndrome.
To financially assist organizations that focus on improving the lives of those with Fragile X syndrome. This assistance is intended to improve the treatment, advocacy, education and research for those with Fragile X syndrome.
INTRODUCTION TO FRAGILE X SYNDROME FROM THE FRAGILE X SOCIETY
What is Fragile X Syndrome?
- Most common inherited cause of autism and intellectual disabilities worldwide
- A genetic condition that causes intellectual disability, behavioral and learning challenges, and various physical characteristics
- Occurs in both genders but males are more frequently affected and with greater severity than females
- Developmental problems include learning disabilities and cognitive impairment
- Occurs in approximately 1 in 4,000 males and 1 in 8,000 females
What Causes Fragile X Syndrome?
- A mutation in which a DNA segment, known as the CGG triplet repeat, is expanded within the FMR1 gene
- Normally, this DNA segment is repeated from 5 to about 40 times but in people with fragile X syndrome the CGG segment is repeated more than 200 times
- This abnormally expanded CGG segment turns off (silences) the FMR1 gene preventing the gene from producing FMRP
- Deficiency of this protein disrupts nervous system functions and leads to the signs and symptoms of fragile X syndrome
What Are Signs & Symptoms
of Fragile X Syndrome?
- Moderate to severe delayed development of speech and language by age 2
- Most males have moderate to severe intellectual disabilities
- About one in three affected females are intellectually disabled
- Children may also have:
- Anxiety and hyperactive behavior such as fidgeting or impulsive actions
- Attention deficit disorder (ADD) including impaired ability to maintain attention and difficulty focusing on specific tasks
- About one in three have features of autism spectrum disorder that affect communication and social interaction
- Seizures occur in about 15 percent of males and 5 percent of females
- Most males and about half of females have characteristic physical features that become more apparent with age including long and narrow face, large ears, prominent jaw & forehead, unusually flexible fingers and flat feet
- Most are very social, friendly, have excellent imitation skills, strong visual and long-term memory, like to help others and a wonderful sense of humor
How Do You Treat Those
With Fragile X?
- Fragile X is genetic so focus is on treatment rather than prevention
- Many treatments to improve lives of those with Fragile X
- Special Education
- Speech, occupational, sensory integration training
- Behavior modification programs
- Medications
- Treatments tailored to specific needs
- Detailed information available at National Fragile X website: https://fragilex.org/learn/treatment-and-intervention/
Who Receives Your Tax-Deductible Donations?
Your donations are allocated between highly-recognized and established non-profit organizations and foundations that provide Research, Advocacy, Education and/or Treatment for those with Fragile X syndrome. These include such organizations as:
Section 501(c)(3) organizations must make their application (Form 1023) and the three most recent annual returns (Form 90 or Form 990EZ) available to the public upon request and without charge. An exception for providing copies is provided only for organizations that make their disclosed materials “widely available” (i.e. on the internet).
We are a fully accredited 501(c)(3) non-profit organization.
Application for Recognition of Exemption (Form 1023)
IRS Letter of Determination