“Go Potty”

We had been potty training when Maggie started going through regression.  We hadn’t made it to wearing panties but she was understanding the concept.  After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Rett Syndrome…we kept asking ourselves.  Is it possible to potty train a kid with Rett Read more about “Go Potty”[…]

The waiting game

For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status.  Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about it, I thought about it. I stalked the Rett family pages, I stalked parents that Read more about The waiting game[…]

New treatments on the horizon

A year before Maggie was diagnosed, there were no treatments for Rett Syndrome. Today the Rett Syndrome Research Trust announced they were funding two additional clinical trials, bringing the total to about six.  Six is a massive number in comparison to zero.  It’s an impressive accomplishment for all of the scientists and families who have Read more about New treatments on the horizon[…]