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Posts tagged with: Spinal Muscular Atrophy

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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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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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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New Year’s Resolution? New Bedford Half Marathon!

January 01, 2011 by Victoria Strong

Feeling the need to challenge yourself? Wanting to get in shape? Thinking about getting involved in philanthropy? Well, you have a little over two months to prepare -- the New Bedford Half Marathon is calling YOUR name and so is Team GSF!!!

Rated one of the top 25 half marathons by Runner's World...

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Camping!

December 29, 2010 by Victoria Strong
Three words:Camping with Hayden! Yep and that equals a VERY happy little girl...make that two very happy little girls...and four very happy parents watching them. Visualize: fishing, dancing, camp fire, sparklers, family, FUN! Chris and Jennifer set everything up. They are spending time in Pismo...
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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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The MDA and Gwendolyn

December 20, 2010 by Victoria Strong
SMA is a muscular dystrophy disease. Like cancer and its many awful versions, there are many forms of muscular dystrophy that fall under this one umbrella. The Muscular Dystrophy Association was the first organization to really put a face to these many diseases with long and often hard to pronounce...
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Great News

December 13, 2010 by Victoria Strong

Good news -- GREAT news! Gwendolyn's appointment today went really well. All things considered, Dr. Yuan is actually really pleased with how Gwendolyn looks and sounds. Her labs came back excellent. Her x-ray was fabulous. And overall she is in tip-top shape. WHEW! We talked to Dr. Yuan for hours...

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Some Worry

December 13, 2010 by Victoria Strong
We are worried. We have been for a month now, but we keep hoping we will see improvement. We keep hoping we aren't seeing what we are seeing. Gwendolyn just isn't herself. She isn't sick. She wants to do and go and see, but her energy is low. She is not coming off bipap for very long. She is...
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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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Thinking of Jonas

November 22, 2010 by Victoria Strong

On Thursday night we learned that our dear sweet special friend Jonas Coleman had passed away -- a gorgeous blue-eyed almost 3-year-old darling little boy. Tomorrow is his funeral. And we are heartbroken.

And while I try to sit with the thoughts of him now being able to run free, of him no longer...

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Fun With SMA Friends

November 18, 2010 by Victoria Strong

Ahh what a weekend! It was awesome!!! GSF's Golf For A Cure was held on Friday (more on that soon) and we were so, so excited that several of our SMA friends came into town to support it and spend time with us. The Calafiore's, Chris and Jennifer, and their darling daughter, Hayden, stayed at our...

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GSF/SMA Featured In Video By Chase Community Giving

November 15, 2010 by Victoria Strong

Guess which charity is being featured by Chase Community Giving? Yep, the Gwendolyn Strong Foundation!!!

We are really honored that out of all of the hundreds of charities and great causes who have won Chase Community Giving grants over the last year, that they selected the GSF to feature in a...

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NPR - California Report - “A Family Fights Spinal Muscular Atrophy”

October 02, 2010 by Bill Strong
NPR - California Report

This is the segment that aired statewide in California on NPR's California Report on Gwendolyn, us, spinal muscular atrophy (SMA), the Gwendolyn Strong Foundation, our petition, and the SMA Treatment Acceleration Act. Thank you Diane for capturing the reality of SMA and creating such an incredible...

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SMA BLOG PARTY: This is SMA

September 16, 2010 by Victoria Strong

Today is the first ever "SMA BLOG PARTY!" Thanks for joining us by reading about the #1 genetic killer of young children, posting about this cruel disease, and sharing the links with others. The idea of the "SMA BLOG PARTY" is simple -- bloggers come together to 1) Talk about SMA, 2) Put a face to...

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Jerry Lewis/MDA Telethon: Gwendolyn Is Heading To Hollywood :)

September 04, 2010 by Bill Strong

We're excited and honored to have been invited by the Muscular Dystrophy Association (MDA) for an on-air family interview during this year's Jerry Lewis MDA Telethon this Labor Day weekend.Few television traditions in America are as popular as the annual Jerry Lewis MDA Telethon or have had such...

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GSF Selected for Jimmie Johnson Helmet of Hope

August 02, 2010 by Victoria Strong

We are so, so excited! We just received news from the Jimmie Johnson Foundation that the Gwendolyn Strong Foundation (GSF) was selected for this year's Samsung Helmet of Hope!!! We are absolutely honored to be part of this wonderful project and beyond thrilled that more people will now hear about...

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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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Featured

June 30, 2010 by Victoria Strong
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