by Remember The Girls | Sep 19, 2023 | Community
Being a Female with Fragile X Syndrome Written by Carly DolanPosted 09-19-2023 Fragile X syndrome is a genetic disorder that is caused by changes in a gene called FMR1. FMR1 usually makes a protein called FMRP needed for brain development. People who have FXS don’t...
by Remember The Girls | Feb 22, 2023 | Community
“Are you guys gonna have more kids?” Written by Samantha CooverPosted 02-22-2023 An innocent enough question. As adults it’s so common to meet someone and try to get to know them through questions like “So what part of town do you live in?” “What do you do for a...
by Remember The Girls | Jul 19, 2022 | Community
Mom and Manifesting Carrier Written by Beth BauerPosted 07-19-2022 It was November of 1993 when my first son, Alex, was born. He was diagnosed with Myotubular Myopathy (MTM). In meeting with the geneticist, I was told that I was “just” a carrier and would never have...
by Remember The Girls | Nov 16, 2020 | Community
Legally Blind With X-Linked Retinitis Pigmentosa Written by Tia Mc’DanielPosted 11-16-2020 The day after Christmas 2018 I started experiencing flashes of light in my peripheral and I instantly knew something was wrong, I made an appointment with an eye...
by Remember The Girls | Jul 11, 2020 | Community
Kisses and Cream: A Story of X-Linked Ichthyosis Written by Hillary ChristiePosted 07-11-2020 It all started with “I’ve never heard of this before, I just got off the phone with the children’s hospital, this is all the information I have and I know...
by Remember The Girls | Apr 27, 2020 | Community
The Unexpected Written by April BizzellPosted 04-27-2020 When we are growing up we think about how we want our lives to be, how many children we want, if we’re going to get married, what kind of house we want to live in, all kinds of things. Those are the simple...
