For the past four years, the holiday season has been one that we have dreaded. What should be a joyous and uplifting time of year, is filled with pain and sadness. AJ and I push through each season and take Continue Reading
Soccer season success! Buddy included….
Warning! Cute post alert! Maggie played soccer and had the time of her life. We became a soccer family and it really brightened up our Saturdays. To be able to go to the soccer fields and have Maggie play and Continue Reading
Celebrity Campaign for Rett Syndrome!!!! #reverserett
[embedyt] https://www.youtube.com/watch?v=6QRk1fgEuRU[/embedyt] Today, a celebrity campaign launches to invite the world to help Reverse Rett. A long list of stars including Sofia Vergara, Matt Lauer, Sarah Silverman, Casey Wilson, Paul Scheer, Billy Eichner, Kristen Schaal, June Diane Raphael and Nick Continue Reading
Reverse Rett LA
On October 13th, the Rett Syndrome Research Trust’s largest annual fundraiser will take place in Los Angeles. Jenny and I are co-chairing this year in addition to chairing the auction. We have set a goal of raising $1MM at this Continue Reading
I’m running a triathlon for Maggie
I have seen people run races for causes. I have heard that this is a thing people do. But I am not a runner. I am not a biker. I am not a swimmer. I am just a dad who Continue Reading
How to Concert
Whenever we want to do something big and fun that typical kids get to do, it takes careful planning. We spend most of the time wondering if we’re crazy for making her do some of these things, and the rest Continue Reading
Return to Disney
My birthday was a couple of weeks ago. My sister and her family came to visit – it was her birthday too. They wanted to go to California Adventure and Disneyland. This is not something we have cared to do Continue Reading
It’s been a long year
I haven’t sat down to write a blog about Maggie since December. That’s actually not right. I have sat down to write, but I didn’t know what to say. Jenny took up the reins and she kept you all updated Continue Reading
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 Continue Reading
Memorial Day weekend
Holidays can be stressful. All holidays. Right now, Maggie is so exhausted from her new seizure medications, on a day to day basis, we never know what to expect. There are plenty of days, we find ourselves tied to the Continue Reading