Fragile X Awareness Month falls in July every year to create awareness and support systems for families impacted by the rare syndrome. A mutation in a person’s F.M.R.I. gene causes F.X.S., leading to intellectual disability in the long term. Some people can inherit the syndrome across generations, while others may be the first in their family to have it. Since F.X.S. still has no cure, it’s crucial to raise awareness and advocate for more research.
History of Fragile X Awareness Month
Fragile X syndrome or F.X.S. is a rare genetic disorder caused by changes to the F.M.R.1 gene. F.M.R.I. is the gene responsible for the production of F.M.R.P.— a protein critical for brain development. People who have F.X.S. cannot make this protein. F.X.S. can affect both men and women, but women often show milder symptoms.
Since testing for F.X.S. is rare, diagnosis often takes place only at a later stage. Regardless, parents can watch for several early warning symptoms to prevent the condition from worsening. One of the signs is a developmental delay — a child having trouble sitting, talking, and walking like other kids the same age. Pay close attention to a child struggling to learn new skills or pay attention. F.X.S. symptoms can also manifest as social anxiety, acting without thinking, not making eye contact, or hand flapping. F.X.S. can increase the chances of intellectual disability or Autism Spectrum Disorder.
It’s worth remembering that F.X.S. symptoms can look different for different people. The disease is more common in boys but can affect boys and girls. Symptoms can range from severe to mild for both.
Although F.X.S. is genetic, it doesn’t necessarily mean the disease runs in the family. The root lies in the size of a person’s F.M.R.1 gene which can vary from one person to the next. The gene can become progressively larger through generations, which is why some F.X.S. patients will find no family history associated with the disease.
F.X.S. still has no cure, which is why an early diagnosis is imperative. Families can avail of numerous therapeutic and behavioral services or reach out to support groups that can help. Fragile X Awareness Month aims to spread the word and advocate for research, support, and treatment to help patients live better-quality lives.
Fragile X Awareness Month timeline
Scientists, Martin and Bell report the first Fragile X-linked pattern.
Researchers, Lubs, and colleagues provide scientific definitions of F.X.S.
The U.S. Senate passes a resolution naming July 22 National Fragile X Awareness Day.
Researchers at “UCalgary” discover how to replace a missing protein in the brain that impacts hyperactivity.
Fragile X Awareness Month FAQs
What is Fragile X Awareness Day?
World Fragile X Day is on July 22 every year. The day supports families affected by Fragile X and provides updates on the latest research and studies to find a cure.
What is the color for fragile X syndrome?
Many landmarks and buildings across the U.S. and Canada light up teal to mark Fragile X Day. The gesture supports people affected by the disease and helps spread the word.
Is Fragile X condition associated with autism?
Fragile X syndrome is one of the most common causes of autism. About one-third of those who have the syndrome also have autism. However, even those who do not have autism often exhibit autistic characteristics such as avoidance of eye contact and social difficulties.
How to Observe Fragile X Awareness Month
Learn about F.X.S.
Read up on F.X.S. and share information online. Show your support to patients and the larger F.X.S. community.
Organize and advocate
Sign petitions. Write to Congress. Strong policies, funding, and research can create better futures for those suffering.
Offer help and motivation
If you know of families struggling, encourage them to find help. Point them towards credible services or support systems in your city or area.
5 Facts About Autism Spectrum Disorder (A.S.D.) That Will Blow Your Mind
No blood tests or medical detection
Doctors check children for A.S.D. through a range of neurological and developmental tests.
One in 18 children has A.S.D.
A.S.D. occurs frequently and is five times more likely to affect boys.
The importance of “spectrum” in A.S.D.
Every child with A.S.D. is unique; symptoms and personalities differ from one person to another.
Remarkable reading abilities
Children with A.S.D. often have hyperlexia — reading abilities above grade levels in school.
A.S.D. and creativity
Individuals with ASD are generally creative with an easy flair for theater, writing, music, dance, and art.
Why Fragile X Awareness Month is Important
Builds awareness and community
Fragile X Awareness Day offers support to families who may be struggling to cope. They don’t need to go through this alone.
Supports children on a different journey
Awareness helps families understand their children better and prevent additional distress. It answers the whys of inexplicable behavior or lack of progress.
Dismantles the stigma
Lack of awareness of F.X.S. can result in conflict or biases. The more informed we are as a society, the better the harmony.
Fragile X Awareness Month dates