NNZ trial press report released

This past week has been a roller coaster of emotions. Last Tuesday November 12,2014, two days after Maggie’s 4th birthday. Neuren Pharmaceuticals released the information regarding the NNZ trial for Rett Syndrome. This is a big deal. There are several trials going on right now, which is great, but the process of drug trials is…

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Maggie’s First Seizure

I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday.  This was at 9am.  She fell asleep right after this for about two and a half hours. Somewhere in the middle of that nap I realized what it really was.  Her head had fallen forward in her stroller and she was…

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Beauty Marks

Sorry to be overposting this week, but a lot is going on.  Our good friends Kate and Joey from Mr. Kate, a lifestyle brand, are just uber creative and smart and savvy and good looking.  And they’re launching a new set of Beauty Marks this week that features a large Magnolia flower.  They’ve pledged $1…

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Maggie on the news

The news did a story on us back in August when we put out the video (bit.ly/magnoliashope).  It airs Wednesday, November 12th, on KCal9 at 10:00 PM.  If you’re not local, here’s the story: http://losangeles.cbslocal.com/2014/11/12/couple-determined-to-find-cure-for-daughters-rare-condition/ I’m not sure what we said at this point, or if they caught Jenny or me crying on the news.  But I’m…

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Birthday Celebration

Last year we were on the east coast for Maggie’s birthday and didn’t really have the opportunity to do a big party.  Plus at 3, would she really care?  This year, after a lot of uncertainty, we decided to give her a real party.  We spent a week and change talking to her about it…

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Halloween

We didn’t know how Halloween was going to go, this year.  It’s really only the second time she would have been  trick or treating since she’s been born.  It was too hectic last year.  And the year before we went, but she barely cared.  So this year was technically the first try at it. It’s…

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My email chain with the school district:

Names have been removed to protect everyone. I sent this first letter to the PT and OT assessor. Hi…, After some consideration, and in part, because I didn’t know I was supposed to have the discussion at the IEP, I feel like I have to strongly disagree with your recommendation of only 120 minutes/year of pt,…

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Palm Springs

A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures.  It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body temperature.  The last one was a new discovery.  She’s always run a little hot, but…

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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…

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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…

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