This DownsideUp Life

Its been a very dramatic week of extreme highs and devastating lows for the Rett Syndrome community. Listen as Heidi and Jenny process the information. Heidi is Nancy Drew and Jenny is just hanging on..

OMG! Neurogene released an update on the gene therapy trials for Rett Syndrome and we are thrilled, excited and cautious. Exciting newsthat we can't fully be excited about but also can't stop ourselves from being excited, GAH!

Neurogen tells us what is happeing in the clinical trial...al l we can say is...Let's go!

Just some thoughts on the election and how we feel. Which programs in the crosshairs that worry us.

We wrap up the last day of Rett Awareness month by announcing that Rett Sucks. Its fine, we are fine, we will all be fine.

Ellie is turning 16! Jenny wants to make driving accessible for Magnolia, probably a bad idea. Apple updates their software and we are here for it!

Sometimes scary things happen that make your kids have to think "what if"?

For parents with kids of complex kids with complex needs we have to plan and think of things we don't want to. But we have to.

Heidi and Jenny hypothesize about gene therapy. Heidi has an addendum, hopefully its the right information. We should be celebrating the little steps forward in gene therapy for Rett Syndrome.

Listen for all your complex parenting laughs.

What does inclusion mean to you?

We all want for our complex kids. For all our kids. We want people to do the simple things like say hello and talk to them like they would anyone else.