It’s not if, its when…

The News We’ve Been Waiting for: “Gene Therapy Program for Rett Syndrome will be advanced by biotech company.” Last week RSRT sent out an email announcing they will be going to a Gene therapy trial for Rett. Reading those words took my breath away. I froze for a moment. My hands were shaking. Since Maggie was diagnosed, I Read more about It’s not if, its when…[…]

Goodbye 2016, Hello 2017

Everywhere I look, I see people saying 2016 was the worst year. I get it. There is no doubt 2016 was extremely difficult for us. You guys have watched Maggie push through so many obstacles that Rett has thrown at her. The past few years, we celebrated her accomplishments more than not. Then 2016 happened. Read more about Goodbye 2016, Hello 2017[…]

A two week journey in two parts. Part 1.

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 Texas with Jenny’s family and then go do a vacation with my family some place Read more about A two week journey in two parts. Part 1.[…]

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. Maggie has lost her speech. Maggie’s arms & hands have Parkinson’s like tremors. Maggie hasn’t Read more about Symptoms of Rett Syndrome | Share for Awareness[…]