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Posts tagged with: Spinal Muscular Atrophy

Don't Get Discouraged

January 17, 2010 by Victoria Strong
It is day three of the Chase $1 Million voting and GSF is holding strong in the top 10. In fact, we are over 10,000 votes and are still in 6th place. I know everyone is tired, frustrated and getting discouraged by the competition. We have something the other groups don't have -- ENORMOUS PASSION...
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What is SMA?

January 12, 2010 by Victoria Strong
A few folks have requested a simple way to explain SMA, so here are the bullet points we find most important:
  • SMA -- Spinal Muscular Atrophy -- KILLS more young children than ANY other inherited disease -- 50% die by their 1st birthday, 90% by their 2nd.
  • 1 in 40 people UNKNOWINGLY carries the SMA...
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"To One Of The Lucky Ones, The New Year Means More"—

January 05, 2010 by Bill Strong


I thought I'd share this inspiring essay by Ben Mattlin that aired on NPR on January 4, 2010. Ben is 47-years-old, has SMA -- what he describes as a "neurological nuisance", graduated from Harvard, is a...
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Dr. Keirstead's Research Named "Project That Will Change

November 18, 2009 by Victoria Strong
Dr. Hans Keirstead's research was just featured in Esquire magazine as one of 2009's "Six Radical Projects That Will Change Science Forever". This is the groundbreaking research that we wholeheartedly support. Dr. Keirstead and his team are our hope to cure SMA and this is why we started Unite For...
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Grief

November 13, 2009 by Victoria Strong

I don't know why, but I woke up filled with grief today. Nothing happened. Gwendolyn is fine. But some days it is just hard not to feel the heaviness of grief...not to feel overwhelmed with sadness. No matter how many we have met, I've never become used to meeting another sweet family newly...

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SMA Research Study Needs SMA Moms

November 06, 2009 by Victoria Strong
I think carrier screening is crucial to increasing awareness of SMA and in both treating and preventing it. And with SMA carrier prevalence as high as 1 in every 40 people, it is high time that SMA joins Cystic Fibrosis as a routine option for potential parents. I know most families impacted by SMA...
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Gwendolyn's First Steps

November 03, 2009 by Bill Strong

Over the last month we've been prepping Gwendolyn and getting her comfortable with her hot pink demo power chair at one of her therapy sessions every week. She's taken baby steps, as usual, warming up to the idea at first and slowly making her own decision when she's ready to take the next step.

...

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Vaccinated!

October 29, 2009 by Victoria Strong

We are H1N1 vaccinated! We have been waiting for the shot form of the vaccine to come into our county and started to get nervous as more time passed (and as H1N1 deaths begin in our local hospital). Well, today it arrived and Gwendolyn's pediatrician called us bright and early to come and get it....
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EEG Follow Up

October 09, 2009 by Victoria Strong
We met with a local neurologist this afternoon to discuss the EEG and the episodes we are seeing. It was inconclusive at this time, but there is concern that what we are seeing is indeed a seizure disorder. We were with the doctor for hours today and went over everything from possible medicines to...
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Gwendolyn's EEG

October 08, 2009 by Bill Strong
We've been noticing Gwendolyn having random periods (semi-regularly and mostly off bi-pap) where she is blankly staring into the distance and is more or less unresponsive for several seconds. Her pupils dilate and/or one or both eyes will travel or float during the episode. It's definitely alarmed...
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Unite For The Cure: Micah's March 2009

September 22, 2009 by Bill Strong
On Sunday, we drove to the darling town of Ojai for - Micah's March 2009 - a Unite For The Cure fundraiser organized by the Marshall family. The Marshalls are a very special family to us and, although we wish it were under different circumstances and had nothing to do with SMA, we feel very, very...
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Gwendolyn Update

September 13, 2009 by Bill Strong

Thank you to everyone for all of your thoughts and concerns. Gwendolyn's pediatrician, Dr. David Abbott, saw her on very short notice this afternoon -- yes, on a Saturday (he's amazing)! He didn't see or hear or feel anything obvious and that was a relief. It could be a multitude of factors...
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Concerned About Gwendolyn

September 12, 2009 by Bill Strong
We're pretty concerned about Gwendolyn. She has had several very, very scary choking episodes over the last few weeks while off bi-pap, is really struggling coming off bi-pap at all at this point, has had a few episodes of turning gray and dusky even while on bi-pap, has been lethargic, fussy, and...
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Serial Casting Round II and Construction

September 09, 2009 by Bill Strong
Never a dull moment in the Strong household...

Today, we took Gwendolyn to see her pediatric orthopedist, Dr. Early, for a checkup on how her serial casting was coming along. All good news. Her right ankle is looking very good and probably only needs another two weeks, at most, to get back to...

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Park City Walk & Roll

August 30, 2009 by Victoria Strong
While we were at the wedding, over in Utah several amazing folks walked and rolled for a cure in Gwendolyn's honor. Kelli even had these great Unite For The Cure T-shirts made! Words don't even begin to express our gratitude!!! You guys are awesome!!!
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Serial Casting Success and City Proclamations

August 26, 2009 by Bill Strong
All in a day's work for our little fighter Gwendolyn...

This morning we took Gwendolyn to see her orthopedist, Dr. Early, to have her serial casting performed. Victoria and I were nervous for her, but Gwendolyn was a trooper as usual -- she actually smiled at Dr. Early through almost the entire...

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Serial Casting

August 24, 2009 by Bill Strong
Tomorrow, we will be taking Gwendolyn for serial casting. No, we're not exactly happy about it, but it is necessary and will lead to more good, adventurous, fun stuff for our little fighter Gwendolyn. Serial casting is a noninvasive procedure where Gwendolyn's Orthopedist, Dr. Sean Early, will put...
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Run For Owen

August 16, 2009 by Victoria Strong

I was planning to post about Dorothy Shuler and her extraordinary efforts when I read "Lucy's" post this morning. I am continually struck by the remarkable people in the SMA community -- a club I know we'd all rather not belong to, but nonetheless unites us on a very deep level forever. Dorothy...

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Promising Research Needs Funding

August 11, 2009 by Bill Strong
A few weeks ago, Victoria, Gwendolyn, and I were invited to an update event for a very promising stem cell therapy program headed by Dr. Hans Keirstead, Co-Director of the Sue and Bill Gross Stem Cell Research Center at UC Irvine. In short, this therapy has the potential to end, yes END Spinal...
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A Child's Perspective

August 06, 2009 by Victoria Strong
I just got an email from my sister about her oldest son, William. William is five years old and, as a proud aunt, one of the most darling people on Earth. He was so, so excited for Gwendolyn to be born. He knew I was going to have a girl. (He wanted her to be named Mack -- don't know why.) He...
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