National Fragile X Awareness Day is observed on July 22 every year. The objective of the day is to raise awareness about Fragile X syndrome (F.X.S.). F.X.S. is the “most common inherited cause of autism and intellectual disabilities worldwide.” It has no cure at present. This genetic disorder occurs when a single gene on the X chromosome ceases to function, shutting down completely. This gene, in particular, is needed to synthesize a protein responsible for brain development. A lack of this protein, as found in F.X.S., leads to developmental issues.
History of National Fragile X Awareness Day
Fragile X syndrome is a genetic disorder that is the “most common inherited cause of autism and intellectual disabilities worldwide.” It affects all sexes. Those with F.X.S. tend to have delayed development of speech and language. Intellectual disabilities also may surface in such individuals, along with anxiety, A.D.H.D., seizures, and autism.
Activist groups in the 1990s fought hard to gain legislative recognition of Fragile X syndrome. The Children’s Health Act of 2000 was an endeavor to set in place a research act for not just Fragile X but also other conditions like autism, juvenile arthritis, juvenile diabetes, and childhood asthma.
The FRAXA research foundation has been a central figure in the fight to gain F.X.S. recognition. David Busby, especially, gained a great deal of goodwill with members of Congress while he was rallying for legislation. Though there remains no cure for the condition, these Congress People also recognized the need for awareness — so when Brusby asked for an awareness day to be dedicated to those living with F.X.S., they obliged. Thus, July 22, 2000, became the first-ever National Fragile X Awareness Day.
National Fragile X Awareness Day timeline
Julia Bell discovers F.X.S.
Congress rejects the Fragile X Research Act.
The Children’s Health Act of 2000 is passed.
The first-ever National Fragile X Awareness Day is observed.
National Fragile X Awareness Day FAQs
What is Fragile X Month?
July is Fragile X Awareness Month.
Can Fragile X be cured?
No, there is no cure.
What is the average lifespan of a person with fragile X syndrome?
The average lifespan of a person with F.X.S. is generally normal.
How to Observe National Fragile X Awareness Day
Read about F.X.S.
The point of National Fragile X Awareness Day is awareness. Contribute to the cause by reading up on the condition.
Tell your family and friends about it
Play a part in spreading awareness. Refer your family and friends to resources where they can learn about F.X.S.
Talk about it on social media
Talk about National Fragile X Awareness Day on your social media accounts. It will help to create a buzz around it.
5 Interesting Facts About F.X.S.
F.X.S. is diagnosed through D.N.A. sampling.
Comorbidities include depression, anxiety, A.D.H.D., autism, sleep apnea, etc.
F.X.S. is a gene disorder.
The intensity of symptoms
Females tend to display milder symptoms than males.
Link with intellectual disability
Fragile X syndrome is the leading known genetic cause of intellectual disability.
Why National Fragile X Awareness Day is Important
It draws attention to a lesser-known condition
Not many people are aware of F.X.S. National Fragile X Awareness Day, thus, plays an important role in raising awareness about its existence.
It helps people to empathize
Ignorance often causes people to act insensitively. The greater the awareness about F.X.S., the more people know to not be insensitive.
It brings attention to an overlooked community
People living with F.X.S. may often be ostracized due to their condition. National Fragile X Awareness Day rightfully brings attention to the community of people who live with the disease.
National Fragile X Awareness Day dates