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Posts tagged with: Spinal Muscular Atrophy

SMA iPad Giveaway Winner

June 21, 2010 by Victoria Strong

And the winner is.....

Sydney -- 5 years old, SMA Type 1, from Michigan

Chessa -- 14 years old, SMA Type 2, from Georgia

Yes, that's right TWO people won the Apple iPad Giveaway!

We were so moved by the more than 100 entries that we simply couldn't stop at one iPad. Congratulations Sydney and Chessa --...

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Calling All SMA Families—Win a FREE Apple iPad!

June 14, 2010 by Victoria Strong

The Strong family, together with Milverstead Publishing, is super excited to be giving away an Apple iPad to one lucky person on SMA Space.

Yes, that's right. One family impacted by spinal muscular atrophy could win a FREE Apple iPad! Doesn't cost a thing. No strings attached. You just submit an...

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SMAandNutrition.org: Calling All SMA Type I Families, We Need YOUR

May 28, 2010 by Bill Strong
I don't think anyone would argue that nutrition and proper dietary management is a critical component to any Spinal Muscular Atrophy (SMA) care philosophy. There are several options and points of view, but, unfortunately, to date there has yet to be any data driven scientific research to provide a...
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Hope Calendar: GSF Selected as Beneficiary

May 17, 2010 by Victoria Strong

We are so excited -- the Gwendolyn Strong Foundation was just selected by the Hope Calendar as their charity for 2011. The Hope Calendar was started by Houston photographer, Debi Gomez, as an effort to give back to causes impacting children and, in the last three years, over $19,000 has been...

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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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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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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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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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May Day Featured

April 25, 2010 by Victoria Strong
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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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Moving Forward

April 18, 2010 by Victoria Strong
We are doing okay. Gwendolyn is back to wanting books and songs and helicopter rides. But it is going to take us a good while to fully recover from that episode. Sheer minutes, perhaps seconds, rallied in our favor yesterday and it is difficult not to think of the what ifs.

This isn't the first...

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Scary Saturday Morning

April 17, 2010 by Bill Strong
I'll preface this by saying that Gwendolyn is okay, but this is a Saturday morning that we'd like to reflect on, learn from, put in perspective, and put behind us.

This morning Gwendolyn stopped breathing, turned completely blue and cold from head to toe, and was lifeless for several minutes.We...

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Rare Disease Day

February 27, 2010 by Victoria Strong

Tomorrow is "Rare Disease Day," the one day each February that the rare disease community comes together to raise awareness and celebrate our shared strength. NORD (National Organization for Rare Disorders -- a branch of the NIH) created this campaign to raise awareness of rare diseases as a public...
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2010 Winter Wine Fundraiser in Memory of Sweet Baby Zane, Malvern,

February 15, 2010 by Victoria Strong

On March 7th, Hillary and Keith Schmid are hosting yet another amazing SMA fundraiser in the Philadelphia area. Since their daughter, Zane, was diagnosed with SMA, the Schmid family have organized and campaigned and fundraised with enormous passion and drive. They lost their sweet baby Zane, who...
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My 2 Cents On Study: Screening For Spinal Muscular Atrophy (SMA)

February 09, 2010 by Bill Strong

The results of a study has apparently "concluded" that pre-screening for Spinal Muscular Atrophy (SMA) is not cost-effective and its "findings" were presented Friday at the annual meeting of the Society for Maternal-Fetal Medicine in Chicago. The study, based on its statistical assumptions,...

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...Life After Chase…

January 30, 2010 by Victoria Strong

We'd be lying if we said the last week was a big party. While we are so, so proud and beyond thrilled with the outcome of this exciting contest, when the cheering stopped we still had to give Gwendolyn a breathing treatment and put her to bed and watch her oxygen levels and look for any signs of...
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One Final Push!

January 21, 2010 by Victoria Strong

So, here we are. Almost seven full days after embarking on this Chase Community Giving journey together. What started as a whisper behind a unique awareness and fundraising opportunity for this amazing SMA community has roared to life and turned that whisper into a beautifully positive, moving, and...
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Incredible Support

January 19, 2010 by Victoria Strong
There are so many exciting things happening surrounding this amazing campaign, growing our vote numbers and raising much needed awareness of SMA. We are truly inspired by every one of you for rolling up your sleeves and fighting for this with us, calling in favors, thinking outside of the box, and...
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