by Remember The Girls | Jun 11, 2024 | Community
A Beacon of Hope for Rare Disease Parents Written by Faith CosgrovePosted 06-11-2024 Her sunny disposition and cheeky sense of humor may give the impression that Maddy has had an easy hand in life. However, beneath this jubilant exterior is a woman who has undergone...
by Remember The Girls | May 30, 2024 | Community
Theresa’s Story:”It took me thirty years to get the diagnosis of myotubular myopathy” Written by TheresaPosted 05-30-2024 Theresa is 67-years-old and impacted by myotubular myopathy (MTM). She learned about MTM 6 years ago after originally being...
by Remember The Girls | Mar 14, 2024 | Community
Live Your Story Written by Faith CosgrovePosted 03-14-2024 Imagine sitting in a doctor’s office as a young teenager with a world of possibilities at your fingertips and being told that from that point forward you were to stop doing everything you love. After being...
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...