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SMA BLOG PARTY: This is SMA

September 15, 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 this awful disease, and 3) Help WIN $20,000 for SMA research! Be sure to link YOUR "SMA BLOG PARTY!" post to this post by adding it in the comment section below -- so we can all find it, read it, and help end SMA one blog post at a time!

So here is my "SMA BLOG PARTY" post:

Before Gwendolyn was born, I had never heard of SMA -- Spinal Muscular Atrophy. I had a perfect pregnancy. No alarming tests or ultrasounds. And she always loved to stick her little foot in my belly button (and hard). Our sweet baby was born kicking and screaming and passed all current newborn screening. She fed well, porked up like a champ, and we took her home proudly.

SMA entered our world when Gwendolyn was three months old...we just didn't know it yet. We spent months, countless doctors visits and 4 weeks in the hospital, trying to figure out what was going on with her and we were so, so hopeful that it was something treatable. It wasn't.

This is the day Gwendolyn was diagnosed with SMA. She was almost six months old. I got the call from our neurologist about 10 minutes after filming this video. I didn't film any more that day.

And this is the email we wrote to our friends and family. We couldn't pick up the phone except to immediate family and, well, those conversations were not pretty.

A lot has changed since then. We have learned how to live with SMA. We have learned so much more about caring for Gwendolyn and where research stands. And we have learned how to give Gwendolyn a rich, full life despite the impacts of this cruel disease. But... SMA IS our life now. No matter how much we carry on normally, SMA impacts every single aspect of every single thing in our daily life -- and, especially, in Gwendolyn's. There is no escaping it for even a moment. And, although I am grateful for every second I have with Gwendolyn and I adore her spunky personality, I will never stop wishing she did not have SMA...because I want more. More playing. More smiles. More "I love yous." More time.

What is SMA?

  • SMA kills more young children than any other inherited disease, is the most common cause of genetic infant mortality, is the #1 genetic killer of young children.
  • SMA is degenerative, causing the weakness and wasting of voluntary muscles -- eventually impacting crawling, walking, standing, sitting up, coughing, breathing, swallowing, speaking...anything requiring muscle strength.
  • SMA is estimated to occur in 1 out of every 6,000 live births. Incidence rates are comparable to the more well known ALS/Lou Gehrig's disease and Cystic Fibrosis.
  • 1 in every 40 people unknowingly carries the SMA causing gene or nearly 8 Million potential parents in the U.S. alone -- making it "common." Both people must be carriers for the disease to be passed on -- making it "rare." There are simple blood or saliva tests available to learn if you are a carrier before you get pregnant. The American College of Medical Genetics recommends ALL couples be tested for SMA.
  • SMA is terminal. There is currently no treatment or cure... BUT there is much research work being done around the world and it holds enormous potential. In fact, the National Institutes of Health selected SMA as the disease closest to treatment.
  • SMA research is drastically underfunded --> YOU can help!

PLEASE VOTE: Its really this simple >

  • You can vote once EVERY DAY from now until September 29th at 5 PM EDT
  • Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click Vote Now!
  • Thats it! Its really that simple
  • Dont forget to add your name to the DailyVoteReminder.com list so you dont miss a $20K vote.
  • Anddont stop there SHARE!

This documentary isn't about our family...but our story is not very different. This is SMA...and Bill and I are determined to fight alongside Gwendolyn, all of those battling SMA, all of those lost much too early to this disease, and all of YOU until SMA is no longer a death sentence.

Talk About It

Here's our contirubution to the blog party: http://andysarmy.com/this-is-sma
Posted by Audra Butler on 2010-09-16 05:12:36
Just posted @ http://amateurian.blogspot.com/2010/09/blog-for-sma.html Good Luck!
Posted by Angi Polderman on 2010-09-16 05:13:59
Whoo hoo!! We're ahead today on the Jimmie Johnson foundation!! Go GSF!!!
Posted by Sheri on 2010-09-16 07:55:19
I posted on our blog www.ourbergfamily.blogspot.com about getting rid of SMA!!!
Posted by Monica Berg on 2010-09-16 08:08:11
This is SMA. This is Luca's story. -- http://www.lucafuorvito.com/index.html/
Posted by Victoria Strong on 2010-09-16 08:17:18
Thank you "Becky Big Bytes" for joining the SMA Blog Party! -- http://beckysbigbytes.blogspot.com/2010/09/i-find-true-movers-and-shakers-of-world.html
Posted by Victoria Strong on 2010-09-16 08:18:17
[...] - if you feel like posting about SMA…. the Strongs are hosting an SMA Blog event - educating people about the disease. �Join in if you feel moved to do [...]
Posted by Do you know about Spinal Muscular Atrophy? You should. : Extraordinary Mommy on 2010-09-16 08:20:05
Thank you Emma for joining the SMA Blog Party! -- http://www.facebook.com/#!/notes/emma-rogers-hibbard/what-is-sma/439002812331
Posted by Victoria Strong on 2010-09-16 08:22:02
This is SMA -- SMARD. This is Makenzie's story -- http://kendraandryanwebster.blogspot.com/
Posted by Victoria Strong on 2010-09-16 08:22:42
http://bahamasbahamasbahamas.blogspot.com/2010/09/this-is-sma.html http://www.whosays8isenough.net/2010/09/reason-to-post.html
Posted by Cass on 2010-09-16 08:56:46
http://www.yummymummykitchen.com/2010/09/sma-blog-party.html Yummy Mummies fight SMA!
Posted by Marina on 2010-09-16 09:00:17
Hey Guys! We got on your page so no worries Victoria we figured it out!! Thank-you for sharing your post on the SMA Blog Party, we are so deeply touched and honoured to read about your story and beautiful amaziing, sparkly Gwendolyn. Since today is our beautiful daughter and angel Emersyn's 2nd birthday we decided to tie our birthday tribute to Em into the Blog Party since it falls on her special day! Here is our gift to your party with so much love from us and Emersyn! Feel free to share our post at www.emersynpaige.blogspot.com Big hugs to the three of you love the three of us! xoxoxoxo
Posted by Melanie and Jason Klomp on 2010-09-16 09:03:09
[...] Strong Family [...]
Posted by SMA Blog Party: Do you know about SMA? on 2010-09-16 09:07:39
This is SMA -- SMARD. This is Dakin's story -- http://ventsuperman.blogspot.com/
Posted by Victoria Strong on 2010-09-16 09:28:19
This is SMA. Meet the Byrds twins! -- http://bahamasbahamasbahamas.blogspot.com/2010/09/this-is-sma.html
Posted by Victoria Strong on 2010-09-16 09:30:14
Thank you WhoSays8IsEnough.net for joining the SMA Blog Party and inviting the fabulous Cass to guest blog -- http://www.whosays8isenough.net/2010/09/reason-to-post.html
Posted by Victoria Strong on 2010-09-16 09:31:50
Thank you FightSMA for being part of the SMA Blog Party and for all the work you do -- http://www.fightsma.org/blog/sma-families/sma-blog-party-do-you-know-about-sma.html
Posted by Victoria Strong on 2010-09-16 09:33:02
Thank you ExtraordinaryMommy.com for being part of the SMA Blog Party! -- http://www.extraordinarymommy.com/give-good-get-good/do-you-know-about-spinal-muscular-atrophy-you-should/
Posted by Victoria Strong on 2010-09-16 09:35:49
Here's Charleston's blog: http://www.caringbridge.org/visit/teritaylor/journal
Posted by Teri Taylor on 2010-09-16 09:36:12
Thank you SamsterMommy.blogspot.com for joining the SMA Blog Party!!! -- http://samstermommy.blogspot.com/2010/09/sma-blog-party-please-vote.html
Posted by Victoria Strong on 2010-09-16 09:40:30
Thank you LillithFromEarth for joining the SMA Blog Party! -- http://lilithfromearth.livejournal.com/22842.html
Posted by Victoria Strong on 2010-09-16 09:42:04
Thank you for joining the SMA Blog Party! Click to read about Evie and her special birthday -- http://site.pinkpeppermintpaper.com/blog/2010/09/16/under-the-sea-inspiration/
Posted by Victoria Strong on 2010-09-16 09:45:52
Wouldn't wanna miss this party! Thanks Bill, Victoria and Gwendolyn for hosting the first SMA Blog Party! This is Ollie's Tale. This is SMA. http://olliestale.blogspot.com/2010/09/this-is-ollies-tale-this-is-sma.html
Posted by Rebekka on 2010-09-16 09:56:19
Great idea Strongs! Here's our blog..... http://www.sweetbabyzane.com/archives/1538
Posted by Hillary on 2010-09-16 09:59:42
The Fallon Family is fighting to end SMA! www.thefallons.blogspot.com
Posted by Ronda Fallon on 2010-09-16 10:13:59
Here is SMA and Eden: http://anangelandajewel.blogspot.com/2010/09/angel.html
Posted by Shana on 2010-09-16 10:35:35
This is SMA. This is Dylan's story. And Debbie's very first blog post -- http://www.wishingforelephants.blogspot.com/
Posted by Victoria Strong on 2010-09-16 10:40:14
For Kendra and Ryan http://malloryandjustinworkman.blogspot.com/2010/09/sma-blog-party.html
Posted by Mallory Workman on 2010-09-16 11:51:15
Thank you Torreh for being part of the SMA BLOG PARTY and sharing Zeke (and us) with your followers! Click here to read Torreh's post -- http://pleaseuseyourwords.blogspot.com/2010/09/sma-blog-party-uppercase-living-vinyl.html
Posted by Victoria Strong on 2010-09-16 12:26:09
Thank you Fallon Family for posting about SMA today!!! -- http://www.thefallons.blogspot.com/
Posted by Victoria Strong on 2010-09-16 12:34:26
This is SMA. Meet the Johnson Family -- http://www.lennandgayle.blogspot.com/
Posted by Victoria Strong on 2010-09-16 12:39:46
Thank you YummyMummyKitchen.com for joining the SMA BLOG PARTY! We love you guys!!!! -- http://www.yummymummykitchen.com/2010/09/sma-blog-party.html
Posted by Victoria Strong on 2010-09-16 12:44:39
This is SMA. Meet the O'Neill boys. -- http://oneillboys.livejournal.com/
Posted by Victoria Strong on 2010-09-16 12:48:27
Okay, take 2! I think this time I got it all together! http://butterfliesandbananas.blogspot.com/ Here is the link, and I have decided that if I would win I will raffle it off for more funds to defeat the SMA monster! blessings and hugs
Posted by Penny on 2010-09-16 13:22:41
Here is my contribution to the Blog Party as someone who has grown up with SMA. http://dthomas.enablepc.com/2010/09/16/this-is-sma/
Posted by David Thomas on 2010-09-16 14:05:17
We got our blog up on Aiden's site http://www.caringbridge.org/visit/aidenbundy
Posted by Dawn on 2010-09-16 14:25:33
Here's our post! http://thepaskins.blogspot.com/2010/09/sma-blog-party.html
Posted by Sarah Paskin on 2010-09-16 14:29:20
We have joined the SMA BLOG PARTY! www.lucafuorvito.com
Posted by Lynsey Fuorvito on 2010-09-16 14:31:34
Rats! I don't have a blog, but I never miss a party...I just posted a FB note instead!!! The posts I've read today have brought me to tears. What an incredible bringing together of people to share experiences and raise awareness. You guys never cease to amaze me. xxx
Posted by Daalia on 2010-09-16 14:43:25
Thank you "Pretend Blogger Daalia" for joining the SMA BLOG PARTY! -- http://www.facebook.com/?ref=logo#!/notes/daalia-refaat-reynolds/sma-blogger-for-a-day/443809508552
Posted by Victoria Strong on 2010-09-16 15:02:28
This is SMA. This is the Zahn family -- http://www.facebook.com/?ref=logo#!/notes/barb-zahn/so-many-angels/431659766828
Posted by Victoria Strong on 2010-09-16 15:05:38
Thank you Paskin Family for blogging about SMA today!!! -- http://thepaskins.blogspot.com/2010/09/sma-blog-party.html
Posted by Victoria Strong on 2010-09-16 15:11:37
This is SMA. This is Aiden's story -- http://www.caringbridge.org/visit/aidenbundy
Posted by Victoria Strong on 2010-09-16 15:12:42
Thank you Petite Marie for joining the SMA BLOG PARTY -- http://www.petitemarieblog.com/2010/09/sma-blog-party-please-vote.html
Posted by Victoria Strong on 2010-09-16 15:24:23
This is SMA. This is David's story -- from the perspective of living with SMA -- http://dthomas.enablepc.com/2010/09/16/this-is-sma/
Posted by Victoria Strong on 2010-09-16 15:26:47
Thank you for joining the SMA BLOG PARTY -- http://apainlessjourney.wordpress.com/2010/09/16/blog-party/
Posted by Victoria Strong on 2010-09-16 15:28:14
Thank you Little Yellow TreeHouse for joining the SMA BLOG PARTY -- http://littleb-andme.blogspot.com/2010/09/sma-blog-party-mom-needs-our-help.html
Posted by Victoria Strong on 2010-09-16 15:30:23
Brielle and Brooke on SMA KIds: http://brielleandbrooke.smakids.org/our-life-with-sma/sma-blog-party-this-is-sma/
Posted by Sarah Kennedy on 2010-09-16 16:45:25
Thank you Rushworth Family for joining the SMA BLOG PARTY -- http://brigetterushworth.blogspot.com/2010/09/sma-blog-party.html
Posted by Victoria Strong on 2010-09-16 17:13:53
Thank you UnworkingMom for your SMA BLOG PARTY post -- http://theunworkingmom.blogspot.com/
Posted by Victoria Strong on 2010-09-16 17:15:53
Thank you Jolly Mom for your support -- http://www.jollymom.com/2010/09/please-help-gwendolyn-strong-foundation.html
Posted by Victoria Strong on 2010-09-16 17:28:31
Thank you Azure Marie for being part of the SMA BLOG PARTY -- http://azuremarie.com/sma-blog-party/
Posted by Victoria Strong on 2010-09-16 17:32:00
Thank you Jan Dee Crafts -- http://jandeecrafts.blogspot.com/2010/09/sma-blog-party-join-please-you-and-i.html
Posted by Victoria Strong on 2010-09-16 17:33:11
Thank you Cade family -- http://thecadefamily.blogspot.com/2010/09/mrw-face-of-sma.html
Posted by Victoria Strong on 2010-09-16 17:35:56
Thank you Anderson family -- http://derekandallieanderson.blogspot.com/2010/09/smasmard-blog.html
Posted by Victoria Strong on 2010-09-16 17:38:21
Thank you Suite Life -- we knew you would make a splash at this party -- http://thesuitelifeoflucyandethel.com/?p=2310
Posted by Victoria Strong on 2010-09-16 17:50:04
I joined the blog party for SMA, with a few tweaks to fit my personality. Enjoy! http://smileshoelace.blogspot.com/
Posted by MJ on 2010-09-16 17:54:59
SMA BLOG PARTY -- Read Sarah's lovely post -- http://memorysdaughter.livejournal.com/288528.html
Posted by Victoria Strong on 2010-09-16 18:04:43
http://tanyalynnphotography.blogspot.com/2010/09/sma-blog-party.html
Posted by Tanya on 2010-09-16 18:15:55
This is SMA. This is Georgia's story -- http://georgialucaswpg.blogspot.com/2010/09/its-b.html
Posted by Victoria Strong on 2010-09-16 18:24:38
This is SMA. Meet Aubriana -- http://www.caringbridge.org/visit/aubriananavarro
Posted by Victoria Strong on 2010-09-16 18:42:58
This is SMA. Meet Marshall -- http://marshallmurphy.blogspot.com/2010/09/ever-hear-of-blog-party.html
Posted by Victoria Strong on 2010-09-16 18:49:52
Hi Victoria, I emailed you last week about my beautiful daughter Violet... we don't have a blog, but would you be able to share her story in Gwnedolyn's Blog Party? Allison
Posted by Allison Wehrkamp on 2010-09-16 19:15:55
this is sma... eilidh i hope that we are allowed to join the party from the uk? to the strong family - you inspire me...thank you for raising awareness of SMA x
Posted by sheonad on 2010-09-17 01:22:39
oh, and the blog site http://touchandtickle.blogspot.com/2010/09/this-is-sma.html
Posted by sheonad on 2010-09-17 01:32:10
Here is our blog post for the SMA Party. Thanks, Victoria, for another wonderful idea! http://members.webs.com/MembersB/editAppPage.jsp?app=blog&pageID=175931136&token=null#blog/entries/edit/4806110-sma-blog-party
Posted by TJ Grindle on 2010-09-17 03:53:07
Oops! I posted the wrong link to my blog. Here is the correct link- http://bensjourney.webs.com/apps/blog/show/4806110-sma-blog-party-
Posted by TJ Grindle on 2010-09-17 03:55:55
Morning! Victoria posted our link on facebook but I wasn't able to log onto here yesterday :( and I wasn't sure if she had posted our link here so here it is!! http://bootsieandbull.blogspot.com About our angel June Marie.
Posted by Molly Howsden on 2010-09-17 06:10:04
Thanks for inviting me to the party (just wish NONE of us were on the guest list!) Here's my Blog: http://web.me.com/darthshulz/Site/Blog/Entries/2010/9/16_SMA_SUCKS.html
Posted by Dorothy on 2010-09-17 08:47:33
These awesome women don't have a blog...but that didn't stop them from attending the SMA BLOG PARTY and we are so glad to have them!!! They used Facebook notes to be part of the party and be "Bloggers For The Day!" Meet Barb (http://tinyurl.com/2wrw97h ), Emma (http://tinyurl.com/2ca4zzu ), Donna (http://tinyurl.com/2e2pehk), Daalia (http://tinyurl.com/3x48lfb), Brianna (http://tinyurl.com/2wess9d), Jennifer (http://tinyurl.com/27j6m24), Lisa P (http://tinyurl.com/2dq7bq9), and Lisa M (http://tinyurl.com/29lkat3). You are going to want to read each one -- they are beautifully written!!!
Posted by Victoria on 2010-09-17 10:53:06
This is SMA. This is Kaitlyn's story -- http://alifeforkaitlyn.blogspot.com/2010/09/sma-blog-party-what-is-sma.html
Posted by Victoria on 2010-09-17 12:34:16
This is SMA. This is Georgia's journey -- http://georgialucaswpg.blogspot.com/2010/09/this-is-sma.html
Posted by Victoria on 2010-09-17 12:36:05
Thank you Olsen family for being part of the SMA BLOG PARTY -- http://brandonandalisha.blogspot.com/2010/09/day-16-sma.html
Posted by Victoria on 2010-09-17 12:45:06
Thank you Stone family for being part of the SMA BLOG PARTY -- http://connorstone.blogspot.com/2010/09/help-us-fight-to-end-sma.html
Posted by Victoria on 2010-09-17 12:46:41
Thank you Anton family for being part of the SMA BLOG PARTY -- http://terrianton.blogspot.com/2010/09/sma-blog-party.html
Posted by Victoria on 2010-09-17 12:47:20
This is SMA. This is Nora -- http://goodentree.com/
Posted by Victoria on 2010-09-17 14:37:08
Thank you for joining the SMA BLOG PARTY -- http://mishmashmomma.typepad.com/blog/2010/09/sma-blog-party-post-and-vote-to-help.html
Posted by Victoria on 2010-09-17 14:59:43
Thank you Caroline for being part of the first SMA BLOG PARTY -- http://tinyurl.com/2akecgk
Posted by Victoria on 2010-09-17 19:39:25
This is SMA. This is darling Lucy -- http://chadncherissefamily.blogspot.com/2010/09/i-hope-its-not-too-late.html
Posted by Victoria on 2010-09-17 19:43:45
This is SMA. This is Scarlett's story -- http://scarlettshope.blogspot.com/
Posted by Victoria Strong on 2010-09-19 22:52:40
[...] all those who participated in the first ever 2010 SMA BLOG PARTY | reaching thousands of new [...]
Posted by Samsung Helmet of Hope – Pure Inspiration, Tons of Awareness � Gwendolyn Strong | Gwendolyn Strong on 2010-09-30 07:02:12

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