Dear Family and Friends,
As we are closing in a decade, we would like to express our gratitude for your support!!! Without YOU, it would not have been possible for us to achieve our mission and goals for the past two and a half decades. Our non-profit organization is staffed by volunteer Board Members, so all donations go straight to our missions. I would like to share what FRAXSOCAL has been up to this year as 2019 comes to a close. Read More
Latest news from FRAXSOCAL.
Participants at our Strike All You Can Family Fun Day held on Nov. 10, 2019. We had lots of fun at our bowling event! (See event photo…) Read More
Upcoming FRAXSOCAL events. Join Us!
Let’s Talk About Sex, Baby… Sunday, Dec. 1, 2019 | Time: 1-5 pm Location: Miller’s Children’s Hospital, Long Beach Audience: Parents & Caregivers of Those with Special Needs -FraxSoCal’s Education Event = Dr. Pal is going to help us get comfortable with the uncomfortable conversation with our teens and pre-teens. Read More
Read more about our Fragile X Community.
My son Tim turned 28 this year and this journey all began when he was diagnosed on November 4, 1993 with FXS. I called the NFXF right away to find out where to find other parents in LA. The only parent listed was Sali Farber in Orange County! The internet was just beginning and the information it held was all very dismal. With the help of Dr. Barbara Wheeler and Deborah Langenbacher at Children’s Hospital University Affiliated Program Sali and I were able to find other families. Our first meeting was held with seven families in my living room in August 1994, 25 years ago! In 1996 we held our first educational conference at Children’s Hospital. In 1997 we became an official non-profit 501 c 3. Read More
What is Fragile X?
Fragile X occurs when there is a change, called a mutation, in a single gene called the FMR1 gene. Every human being has this gene. Some people have only a small change in this gene (referred to as a premutation) and may not show any symptoms associated with Fragile X. Persons with the premutation are called carriers and are at risk to develop other related conditions (see FXTAS and FXPOI below). Other people may have bigger changes in the gene (called a full mutation), which can cause the symptoms of Fragile X Syndrome.
Fragile X is inherited, which means it is passed down from parent to child. The changes in the gene can become greater when passed from mother to child, so a woman who has no symptoms related to Fragile X can have a child affected with Fragile X Syndrome. A male carrier can only pass the premutation, and will pass it to all of his daughters, but none of his sons. Fragile X affects people of all ethnicities, races, and socio-economic backgrounds. Fragile X is named because of the appearance of the X chromosome where the gene mutation occurs, not because individuals with the FMR1 mutation are in any way “fragile”. Read More
