Blog Archive 04/2012

Say Hi! AAC | 5,000+ Global Downloads and V1.1 Release with New Features

April 30, 2012 by Bill Strong
Say Hi! AAC | 5,000+ Global Downloads and V1.1 Release with New Features

We released the original version -- v1.0 -- of Say Hi! AAC in late-February 2012 and since then over 5,000 people around the world have downloaded the free app. That's right! Over five-thousand-people! 5,000 PEOPLE! We've been blown away at the broad use of the app and we are over-the-moon that...

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Gwendolyn Is Going To Kindergarten

April 25, 2012 by Victoria Strong
Gwendolyn Is Going To Kindergarten

Oh my goodness! Oh my goodness! Today is an awesome day. We just got home from touring Gwendolyn's kindergarten. That's right. We met her principal and the teachers, got to go inside the classrooms, talked to the current kindergarten kids, saw all their neat projects and what she will be...

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Washington, DC SMA Advocacy and Research Trip Update

April 22, 2012 by Bill Strong
Washington, DC SMA Advocacy and Research Trip Update

Last week, I flew back to Washington, DC for two days packed with meetings on Capitol Hill, the FightSMA researchers conference, and the FightSMA Board meeting. Although much too quick, it was an extremely productive trip. Our advocacy efforts are paying dividends and several promising research...

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I’m Getting Muddy for Team GSF

April 15, 2012 by Victoria Strong
I’m Getting Muddy for Team GSF

Shortly after the 2011 Team GSF Santa Barbara race, my friend Meri, mom to sweet Aaron (SMA Type 1) felt all kinds of motivated and got Jennifer, mom to Hayden (SMA Type 1) and me all kinds of motivated to run with her in this crazy military boot camp inspired mud race. Crazy. None of us has ever...

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Easter 2012

April 10, 2012 by Victoria Strong

Can you believe how grown up our little bunny is now? This Easter we headed south to Gramma's house in LA for the day. GrandPa, Aunt Kristen and Uncle Richard were there too. We haven't all been together in some time so we were already excited about that. And we haven't been to Gramma's house...

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Project Mariposa :: {WEEK TEN} iPad Grants #22-31

April 06, 2012 by Victoria Strong

If you follow us on Facbook, then you saw the surprise >> Today we are granting ten iPads. TEN. 10! Project Mariposa has now grown from our initial goal of 50 iPads in 50 weeks to 75 iPads in 50 weeks and we are so thrilled...

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Project Mariposa {Month TWO} Recap

April 03, 2012 by Victoria Strong
Project Mariposa {Month TWO} Recap

We are now two months into Project Mariposa and twenty one iPads have been granted to individuals with Spinal Muscular Atrophy. 21! Twenty one people whose lives have been made just a little bit easier because of these incredible devices. And while they are all fighting the same disease, they...

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Wine Tasting To End SMA

April 02, 2012 by Victoria Strong
Wine Tasting To End SMA

Wine, food, music, and friends = a fabulous day! In just TWO WEEKS on Saturday, April 14th the Santa Barbara MDA will be hosting their annual Winter Wine Down and YOU are invited. We are so excited about the 2012 Winter Wine Down and have been busy helping with plans for months. We are beyond...

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Aquarium of the Pacific with Gramma

April 01, 2012 by Victoria Strong
Aquarium of the Pacific with Gramma

Bill's mom, Ellen, now better known as "Gramma," spends every Tuesday with us in Santa Barbara. She lives in Los Angeles, but each Tuesday without fail she drives the hour and a half up to be with us -- who am I kidding -- to be with Gwendolyn smile She is amazing. Each week since Gwendolyn was a baby...

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