Tag Archives: family

Mother’s Day in Oz

I often say that living with Rett syndrome is like traveling in Oz with the Scarecrow, Tin Man and Lion. So, what would Mother’s Day look like there? I think it would happen in the Poppy Field. Such a beautiful … Continue reading

Posted in Mother's Day, Rett Syndrome, Special needs Mother's Day, Uncategorized, Wizard of Oz | Tagged , , , , , , , , , , , , , | 1 Comment

Speechless

In case you are slow to know, there’s a new show out there. One that speaks for US, the families of the speechless. It’s funny! Hey, we have incredibly funny lives at times. It has great lines like….”Other people’s opinions … Continue reading

Posted in Communication, Education, Special needs siblings, Speechless, Trail to a Texas Trial | Tagged , , , , , , , | Leave a comment

Awareness Through New Eyes

We are half-way through Rett syndrome Awareness month. So far, it’s sucked; not only for the Rett syndrome community, but I know for the FoxG1, as well. I also know when we speak of “Awareness” it’s usually in the context … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Syndrome, the sea, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | Leave a comment

Happy Thanksgiving

  As you know, Katelin and I and many others feel a profound sense of gratitude this year, thanks to the success of the NNZ trial and the on-going IGF-1 trial. But, there are many other things, that I and … Continue reading

Posted in Neuren, nnz 2566, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , | Leave a comment