Monthly Archives: February 2015

Rare

Originally posted on Colleen English:
Today is Rare Disease Day and this year’s theme is: Day-by-day, hand-in-hand. I personally love that there is a strong movement of many coming together, from all corners, representing thousands of different diseases, all raising…

Posted in Uncategorized | Leave a comment

Rare Disease Day

Today, Feb. 28, is Rare Disease Day. Around the world, “Day by day, hand in hand” people face these rare diseases and hope for cures. There are about 7000 known rare diseases in the world. In the US a disease … Continue reading

Posted in Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , | Leave a comment

BTD-1…..GO!…..Musing 3

Today, as we reach the 60 day limit from application to hopefully an announcement. I have a simple post. Our wishes have been READY…. . . . . . . . . We’ve been SET for a long time…. . … Continue reading

Posted in breakthrough therapy, FDA, Neuren, NNZ-2566, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | Leave a comment

BTD-2……..Set…… Musing 2

I am a researching junkie. True. Difficult to believe, I know. đŸ˜‰ I like being “set”. I like knowing what I’m getting in for, whether it’s figuring out my daughter had Rett syndrome before any doctor would say “Your daughter … Continue reading

Posted in breakthrough therapy, cure, FDA, Neuren Pharmaceuticals, Rett Syndrome, rettsyndrome.org, Trail to a Texas Trial | Tagged , , , | 2 Comments

BTD-3 (Breakthrough Therapy Designation Countdown) Musing 1-Ready

One of the new things Katelin is saying is “Ready, Set….GO!” Ready? Oh, yes I am. I’m ready for my daughter to have a chance. I’m ready to jump for joy with all the other Rett parents who are ready … Continue reading

Posted in Uncategorized | Leave a comment

Please, Please, Please, Please

One “please” for evey day left. Rett parents say so many “pleases” that never get answered. Please, don’t let that MecP2 test come out positive. Please, don’t let my baby lose her words. Please, let me hear my baby say … Continue reading

Posted in breakthrough therapy, FDA, hope, Neuren Pharmaceuticals, Rett Syndrome | Tagged , , , , | 2 Comments

TO(GET)HER STRONGER

Monday was President’s Day in America, honoring George Washington and Abraham Lincoln. Of course, they deserve to be honored-one for forging a Nation and the other for saving it. Another mom was asking for inspirational quotes and it brought to … Continue reading

Posted in Army of us, FDA, Rett Syndrome, Trail to a Texas Trial | Tagged , , , | Leave a comment