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Posts tagged with: Featured

Trilogy Transition Going Well

May 16, 2010 by Victoria Strong
Gwendolyn is a champ! She is transitioning to the Trilogy with ease and, thanks to the help of so many people, the last few days have been positive ones. The reality that her settings are now so high that she is even more vulnerable weighs heavily on us, but the kindness of others helps to soften...
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Fundraiser: Charm Bracelet

May 14, 2010 by Victoria Strong
Remember the wonderful charm bracelet that I wrote about a few weeks ago -- a gift from a lovely woman named Tanya who sent this very personal and unique present out of the blue? Well after receiving so many requests and questions about it, we are very excited to announce you can now have your very...
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Heading To Stanford For Trilogy 100

May 13, 2010 by Victoria Strong
We'd be lying if we said everything is A-ok in the Strong household. It is not. And while we know we are in a very precarious situation with Gwendolyn, we are hopeful. We have a plan. Team Gwendolyn is in full force!

Gwendolyn had another episode last week. She didn't completely stop breathing, but...

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Texas Hold’Em with Firefighters!

May 12, 2010 by Victoria Strong

Are you in the Camas/Washougal/Vancouver/Portland area? Do you like poker? Well, we've got the event for you!

The Gustafson's are at it again! I received the sweetest email from our friend, Jessica, who is also a fellow SMA mom asking if she could present GSF to the East County Fire & Rescue...

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Yo Gabba at the SB Zoo

May 11, 2010 by Bill Strong

We were so excited that the Santa Barbara Zoo hosted a super special Yo Gabba Gabba event on Friday with the REAL Plex and Brobee characters in attendance! Gwendolyn LOVES Yo Gabba Gabba and we knew she would LOVE the opportunity to meet the cast. We danced to the fun music, hung out with friends,...

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To Shave or Not To Shave?

May 10, 2010 by Victoria Strong

I want you to meet our friends, the Zahn family: Noah, Barb, and baby Lucy. Lucy is the most darling little girl and this July she will turn one. And, yes, Lucy has SMA.

On October 14th, Lucy Zahn was diagnosed with SMA Type 1. Within mere months and in the midst of learning to care for a...

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Happy Mother’s Day Mommy!

May 09, 2010 by Bill Strong
Happy Mother's Day to the most incredible, stupendous, loving, fabulous, intelligent, selfless, adventurous, drop-dead-gorgeous (ok, that was Daddy's addition, but I agree!), wonderful, exquisite, awe-inspiring Mommy in the whole entire universe. Mommy, I love you right up to the moon - and back smile
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Beb-e-ssentials Fundraiser Ending

May 06, 2010 by Victoria Strong

The Beb-e-ssentials fundraiser has been a big success! I love that everyone is so excited about their handmade order and so pleased with it when it arrives. And I just melt when I see the pictures of all the darling children wearing their Beb-e-ssentials gear so proudly! (See gallery below and...

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SMA Warriors: Together We Are Making A Difference

May 05, 2010 by Victoria Strong
Don't you love when $10,000 falls out of the sky! Yes, we just received news that GSF is receiving a generous $10,000 donation. It didn't really fall out of the sky -- a wonderful man has been planning it, a wonderful family was involved, and a wonderful company was a big part of it, too -- we just...
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Our Barista

May 04, 2010 by Victoria Strong

Nonfat, three pump, no whip, extra foam, grande mocha, please!

That's my order every morning for the cutest barista on the block! Gwendolyn loves helping and every morning she and Daddy head down to the kitchen after brushing teeth and getting dressed for the day to make coffee. She hangs out on...

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SMA Sidewalk Sale a HUGE Success!!!

May 03, 2010 by Victoria Strong
The 2nd Annual May Day for SMA Sidewalk Sale was a tremendous success, raising just over $5,000!!! With item donations from over a hundred different families, a dozen volunteers to run the event, and well over 500 shoppers, the sale exceeded all our expectations!!! This is entirely the brain child...
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Three Ways to VOTE for SMA this May!

May 02, 2010 by Victoria Strong
Yes, it is voting time again! And SMA has THREE opportunities to win!The voting is SUPER simple and FAST!

Lionheart --> Bill/GSF is in the Robin Hood Lionheart contest. Go tohttp://bit.ly/10kForSMA and click on "I Support This Lionheart" on the left hand side of the page (the 4th item under his...

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May Day To End SMA This SUNDAY

May 01, 2010 by Victoria Strong
The 2nd Annual May Day to End SMA is this Sunday!!! We are all so excited and it is sure to be a huge success thanks to the generous donations of so many people (THANK YOU!), the hard work of Gramma, Barbara & Owen (THANK YOU!), and the treasure hunting of YOU! Don't miss it. And don't forget to...
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Run For Owen: Run For Gwen

May 01, 2010 by Victoria Strong
UPDATE: Lauren is running the New Jersey Marathon tomorrow, May 2nd! Please send her your support with a message on the Team Run For Owen website or the Fight For Owen Facebook fan page. Or you can still sponsor her race and help her reach her goal.

Lauren, we are cheering you on from Cali and...

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Our Little Picasso

April 29, 2010 by Victoria Strong
Gwendolyn loves art -- especially coloring with markers and painting with watercolors and finger paint. Gramma usually brings a special art project every week. Lately they have been having lots of fun painting shapes and letters together...oh and stirring the brush in the water is lots of fun!
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Team GSF: Meet Stephen

April 28, 2010 by Victoria Strong
Meet Stephen Taylor. Stephen is an incredibly inspiring guy who has enthusiastically joined Team GSF to raise funds for SMA research. On June 26th, Stephen is running the Western States 100 Ultra Marathon. The Western States 100 starts in Squaw Valley California and goes through the Sierra Nevadas...
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May Day Featured

April 25, 2010 by Victoria Strong
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Beb-e-ssentials Fundraiser & The Gwendolyn Butterfly

April 24, 2010 by Victoria Strong

The butterfly in our logo is more than a design element. And while I have called Gwendolyn my little butterfly since she was a baby, it is more than that, too. Like a butterfly, SMA children have beautiful bright knowing spirits, but are delicate and fragile and confined in the cocoon of their...

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Recovering

April 23, 2010 by Victoria Strong
Gwendolyn is doing okay. Apart from worry and insomnia, we are recovering...but it has left us all in a fog. Bill is exhausted.Gwendolyn wants her bipap all the time, which seems more psychological than an actual breathing change. And I start something and completely forget what I am doing. We are...
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Los Angeles Friends: PLEASE Contact Rep. Waxman ASAP

April 23, 2010 by Victoria Strong
It is extremely important that everyone call or email their representatives asking them to cosponsor the SMA Treatment Acceleration Act. but today it is especially critical that our Los Angeles friends tell Representative Henry Waxman that his support is needed.

Representative Henry Waxman is key...

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