Category Archives: cure

Neuren Gets the Green Light!

Well, I was NOT one of the first to get to social media today with the fantabulous news that Neuren has got the go ahead to do a Phase III pivotal trial with Trofinetide. I apologize, it was a day … Continue reading

Posted in cure, FDA, hope, margaret brimble, Neuren, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III, Uncategorized | Tagged , , , , , , , | 2 Comments

A Body Bound by a Brain #1

  When people see a young child with Rett syndrome, parents often get “they look normal.” It’s almost like a question, as if questioning the parent that they’re child is actually disabled. It’s a weird sensation in that moment-there’s nothing … Continue reading

Posted in Communication, cure, fund-raising for rett syndrome, hand clasping in Rett syndrome, hope, Rett Research, Rett Syndrome, Rett syndrome Awareness, Talking, Trail to a Texas Trial | Tagged , , , , , | 1 Comment

Putting the “Fun” in Fundraising

All over the country and world people are promoting Rett syndrome Awareness in many ways. There are fund-raisers galore and many ways the general public can participate. In California there are the upcoming SoCal picnic (Oct 21) and the NorCal … Continue reading

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

Grieving a Child Gone, yet Still Here

For many parents, I’d almost dare to say all, Life can be categorized as “Life before Rett syndrome” and “Life after Rett syndrome”.┬áMy daughter, Katie, is 24 now. For 22.5 years I have loved the child in the “Life after … Continue reading

Posted in boys with Rett syndrome, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , | 95 Comments

A Month of Awareness

  October is Rett syndrome Awareness Month. This means of course to make OTHER people aware of Rett syndrome; for us parents, siblings, grandparents, caregivers the whole YEAR is awareness month.   So, how to make people aware? There are … Continue reading

Posted in Army of us, cure, fund-raising for rett syndrome, Rett Research, Rett Syndrome, rettsyndrome.org, Special needs siblings, Trail to a Texas Trial | Tagged , , , | 5 Comments

We are Nearing the True Unknown

So, we are closing in on the third and final pivotal trial of Trofinetide. It is my understanding that Neuren and the FDA are meeting in October. Sometime next year the study will begin recruiting and start. What the criteria … Continue reading

Posted in acceptance, boys with Rett syndrome, Communication, cure, FDA, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Talking, Trail to a Texas Trial, Trofinetide, Uncategorized | Tagged , , , , , , | 2 Comments

What to do When you have No More Options?

In Rettland, as coined by Colleen English, there are many times you run out of options. There just isn’t any more medicine and science can do. What do you do then??? Some parents are faced with the awful, horrible truth … Continue reading

Posted in cure, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide | 1 Comment