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Posts tagged with: Sma Tips

Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness

August 28, 2011 by Bill Strong
At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly lethal genetic disease.

And...

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Advocating for the Affordable Care Act: Gwendolyn’s Story (Video)

July 20, 2011 by Bill Strong

Over the last several years, we haven't shied away from lending our voices to advocate on behalf of injustices we have faced. Most of these injustices, if not all, are sides to issues that we may have never become aware of had it not been for the life-altering reality of Gwendolyn's Spinal Muscular...

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Gwendolyn In The AeroSling Swing

July 01, 2011 by Bill Strong

It's no secret, Gwendolyn LOVES to swing on the swings. We can't even think about walking past the park near our house these days without taking her on the swings. And at her preschool, she's on the swings every single day. She loves it. And we love it.

Most of the time we hold Gwendolyn in our lap...

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Spinal Muscular Atrophy Power and Backup Power

June 20, 2011 by Bill Strong

In our experience, power and backup power for Gwendolyn's various life-critical machines can be -- well -- a pain in the neck and, when we haven't been prepared, extremely stressful and dangerous. We feel like we've encountered (or stumbled through) just about every power issue and emergency you...

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Spinal Muscular Atrophy Machines and Supplies

April 26, 2011 by Bill Strong

In our personal experience, getting your arms around life-critical machines and supplies can be daunting in the process of dealing with a spinal muscular atrophy diagnosis. What will we need? Where will get all this stuff? What do others use? How are we going to figure all of this out? We remember...

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March 16, 2011 by Bill Strong
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Trilogy 100 Plug Adapter Issue and Cigarette Lighter Adapter Workaround

March 14, 2011 by Bill Strong
We had a pretty scary experience with Gwendolyn's Trilogy 100 bipap while on vacation in San Diego. Gwendolyn has been using the Trilogy for about 9 months now and we absolutely love it. We've had no problems with the machine and we haven't found anything negative about the machine -- nothing at...
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Hayden’s Comfy Cushies—> Must Have Padding for the EASyS

March 10, 2011 by Victoria Strong

SMA families are exceptionally creative -- out of necessity and out of devotion. And Hayden Calafiore's grandmother, Shelly, is proving this once again. There is pretty much one stroller/wheelchair option for SMA Type 1 families -- the EASyS. The EASyS is an awesome chair and we have recommended...

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Getting Out With Gwendolyn…At Some Point, We Just Started Living

February 16, 2011 by Bill Strong

I wrote a blog post in February 2009 titled 25 Honest Things. At the time there was a Facebook "25 Things!" going around and, well, these were my 25 things. None of this has much to do with us getting out with Gwendolyn, but I vividly remember a comment to that post from an SMA mom with a...

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New Awesome SMA Resouce: InsideSMA

February 13, 2011 by Victoria Strong

The Gooden family has been hard at work creating a really incredible resource for SMA families -- InsideSMA. I always love when families come up with something new and innovative to help others!!! The tips, tricks, and advice on here are really wonderful. Everything from how to prepare for and...

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It Arrived!!! Let the Adventures Begin!

December 22, 2010 by Victoria Strong

Yep...it's an extra special, super duper, really big, awesome, stupendous surprise... just in time for Christmas! Gwendolyn's POWER CHAIR ARRIVED! EEEEEEEEEEEE! Yipee! Yipee! We are pretty darn excited around here...but most importantly, Gwendolyn is OVER. THE. MOON!!!

Yesterday all three of us...

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Family Photos

December 07, 2010 by Victoria Strong

Yesterday we had our holiday family photos taken with Jennifer Foster of Z's The Day Photography and Design. Well, family photos really as we have never had professional photos done specifically for the holidays before. Over the last three years we have had the honor of working with some...

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Testing Gwendolyn’s Ambu Bag Before An Emergency

November 27, 2010 by Bill Strong

Let's face it, emergencies are a fact of life for SMA families and we've had our share of urgent medical situations over the years with Gwendolyn -- collapsed lung, regular mucus plugs, power outages, sudden vomit with fear of aspiration, forest fires, battery failures, life-critical equipment...

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Our Preschooler! First Day of School Today!

October 18, 2010 by Victoria Strong

Gwendolyn is going to preschool. Shes going to preschool. PRESCHOOL! Today is the big day! Her very first day of school. Can you believe it?

So the logistics.

I am going with her. Its funny because this is never something Bill and I talked about. We never asked permission from anyone. We...

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Gwendolyn’s AA Diet Update: New Movements

July 27, 2010 by Bill Strong
It's been a bit over a month since we started Gwendolyn on her new Amino Acid (AA) diet and everything has been going really, really well. We were pretty nervous about the switch, but Gwendolyn has not had any issues with the transition other than minor constipation in the very beginning. Since the...
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Power Chair—Get the G-Team Van

July 02, 2010 by Victoria Strong
The power chair is being ordered!!! Hazzah! After almost a year of preparation, trial and error, Jerry-rigging, tweaking, and lots of practice, practice, and more practice, we have found a system that works for Gwendolyn and she is ready to hit the road.

Gwendolyn's disabilities are such that we...

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Gwendolyn’s New Food Regimen—The AA Diet

June 27, 2010 by Bill Strong
This week we started Gwendolyn on a new food regimen, the Amino Acid (AA) diet. This represents a pretty big shift for Gwendolyn and we are appropriately nervous. Any change is always worrisome, but we are also hopeful that the AA diet will benefit Gwendolyn's overall energy and health.

Gwendolyn...

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Bathing Beauty

June 23, 2010 by Victoria Strong
Gwendolyn loves her bath. She gets so excited when we ask her if she's ready. It is definitely one of her favorite times of the day. She can move her arms and legs in the water. She gets to sing songs. She gets to play with her toys. And then when it is all finished, the artist arrives to coif her...
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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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