In Los Angeles, everything shuts down for the final two weeks of the year, as everyone escapes back to their family or goes on vacation. We’re fortunate to be able to do both most years. We typically spend Christmas in Continue Reading
13.1
13.1 Miles. I have never aspired to be a runner. Two years ago, I downloaded the couch to 5K app on my phone. I thought, well it’d be nice if I could run a 5K, that’s 3.1 miles. Who knew Continue Reading
The implications of 5
Last week Jenny wrote about her birthday and the mixed emotions that come with it. This week, I wanted to share a little more detail about that. 5 is an important year for a lot of reasons. In my family Continue Reading
I wrote a poem for Rett Syndrome Awareness…
When I look at her I don’t see her arms flapping. I see a little girl trying to fly. When I look at her I don’t see a girl struggling to breathe I see a girl who takes my breath Continue Reading
Symptoms of Rett Syndrome | Share for Awareness
Rett is a progressive disorder – it will get worse and worse until there is a cure. In other words, we are never out of the woods. Every girl’s Rett syndrome is different. These were Maggie’s Rett symptoms last year. Continue Reading
Hope for Hannah & Gaby – REVERSE RETT LA
Last year when I reflected on the amount of money we raised collectively, I was proud to have been a part of Maggie’s solution, her hope. This event, which takes place in LA on October 29th this year, is a Continue Reading
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 Continue Reading
October is Rett Awareness Month
We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months. What are we going to do? How will we contribute to Rett Awareness Month? I had grandiose plans, but am Continue Reading
Awareness for Rett
The video’s been shared a lot, so thank you for that. It’s at 110,000 views and it’s been pretty cool to see. (If you haven’t seen it yet – http://bit.ly/Magnoliashope.) I do wish we didn’t have to share it. I Continue Reading
Christmas
Christmas is fun because you’re with family and you can just relax. This Christmas was different though, since it was the first one after the diagnosis. We were all a little zoned out and I was very aware of the Continue Reading
