IEP

IEPs are dumb.  That’s the school district process whereby people who have never met Maggie spend 30 minutes with her and evaluate all of the things she can and cannot do and make recommendations about how she’s going to get better.  I mean, how is that even possible? You go, sit in a room and…

Read More

Event Wrap Up Brings Us to…

The auction I put together ended up raising over $30,000 and the event it was a part of raised over $700k – 96% of that goes directly to fund research. That’s a spectacular number and I’m so honored to be a part of something that’s giving so much back. Unfortunately, it’s still just the tip…

Read More

Traveling

Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her entertained when we’re there, what kind of sleeping arrangements will there be, and how will…

Read More

Boston – IGF-1 Clinical trial

A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie.  She’d be the 30th girl of 30 girls in the trial.  Our emotions are all over the place.  This is something we want to do.  We need to do for her.  When we…

Read More

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 glad I’m more or less just a participant in a number of events.  Awareness doesn’t…

Read More

I dance because she can’t

I’ve been trying to get a fundraiser of my own going since we found out about Maggie. The idea started out as a rather large scale collaboration between my old company, Jash, some old friends at Social Media Week, and my new business partner who also runs Comedy Gives Back.  Then it was going to…

Read More

Playing Games

Finding a game that Maggie is willing to play has been impossible.  I don’t even mean board games – that’s not even something that’s worth trying.  Her attention would never hold and her hands wouldn’t let her manipulate any spinner or dice.  Before her regression she would play memory games, but she doesn’t do that…

Read More

Just a normal Labor Day

We traveled to New York for the Labor Day weekend to see my parents and Maggie’s cousins, uncles and aunts for a weekend at my parents house, all under one roof.  We did the same thing a few summers ago, and it was great – bbqs and lobstah pahties, collecting shells by the beach and more…

Read More

First Day of School

There has been a lot of stress and anxiousness preparing for Maggie’s first day of school.  Ours not hers.  We kept telling Maggie that she was going to be going to school and it was going to be fun.  She didn’t really care, but how could she?  She had never been and didn’t really understand, as far as we could tell. …

Read More

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 wish it was already a household name and already had significant funding. For example, I…

Read More