Monthly Archives: May 2016

Boxing Rings and Rollercoasters

First, let me say- Parents of special needs children get sucker punched on a regular basis. Not from schools or insurance companies or any myriad of support systems that are supposed to be there-those are fights we expect when we … Continue reading

Posted in Neuren Pharmaceuticals, Rett Syndrome, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , | 1 Comment

Though She be but Little, She is Fierce

This is a favorite quote of many Rett syndrome parents. It is often posted. Some have tattoos with it. I’m pretty sure there are T-shirts with it. Shakespeare had no idea what an impact that one little sentence would have … Continue reading

Posted in anxiety in Rett syndrome, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , | 1 Comment

A Rett Syndrome Mother’s Day

As special parents know, holidays are almost always a let down. Christmas usually sucks so bad it borders on travesty. Mother’s Day is a complicated day for us mothers. First of all, you can almost guarantee that whole eat in … Continue reading

Posted in cure, hope, Neuren, Neuren Pharmaceuticals,, Special needs siblings, Trail to a Texas Trial | Tagged , , , , , , , , | 4 Comments