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Posts tagged with: Sma Awareness

Dublin Marathon

October 29, 2008 by Victoria Strong
The petition is circling the globe! On Monday, October 27th, Lauren Lundy O'Connor of New York ran the Dublin Marathon in honor of Owen Shuler who lost his battle with SMA in August. Lauren wore a shirt that read, "Help me fight SMA for Owen and Gwendolyn and all the other families of SMA....
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PEP Halloween Bash

October 27, 2008 by Bill Strong




Yesterday we dressed Gwendolyn in her adorable lioness costume (thank you for the costume Auntie Weez!!!) and went to the PEP Halloween event at the Stow House in Goleta. It was a beautiful semi-fall like California day and it was so great to see all of the children dressed up in their costumes and...
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Gwendolyn in "Delaware County Daily Times"

October 27, 2008 by Victoria Strong
Last week Gwendolyn was featured in an article in the Delaware County Daily Times, a newspaper in my sister's area. Thank you super sister Elizabeth for pursuing this and putting yourself out there, thank you Commissioner Heilmann for making the introduction and helping make this happen, and thank...
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Important SMA carrier screening development

October 24, 2008 by Bill Strong
Deborah and Chris Heine lost their daughter Claire to SMA in November 2004. They started the Claire Altman Heine Foundation (CAHF) in memory of Claire and have dedicated themselves to developing a global SMA carrier screening program so that future prospective parents are made aware of SMA and...
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WalMart Warriors!!!

October 19, 2008 by Victoria Strong

On Gwendolyn's birthday, my dear friend, Theresa, rallied an army of SMA advocates and pushed to end this disease. Theresa, whom I've known since elementary school, spoke with Babies R Us about doing an event to raise awareness, but was turned down, so never being one to give up she marched over...
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Extreme Makeover: Home Edition - the Akers family

October 04, 2008 by Bill Strong
On Sunday, October 5, 2008 at 8/7c, Extreme Makeover: Home Edition on ABC will be airing an episode on the amazing Akers family. The Akers' live in West Chester, Ohio and have two daughters, Brooke and Faith, with Spinal Muscular Atrophy Type II and a son, Christian, with Crohn's disease. We hope...
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Petition Event—PEP parents ROCK!

September 24, 2008 by Victoria Strong
Over the weekend the amazing mothers and fathers from PEP gathered together again to rally further support for Petition to Cure SMA. They managed to organize and orchestrate a booth at the Cottage Hospital Baby Fair and spent their Saturday campaigning, all while juggling careers and parenting...
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Thank you for helping promote our petition!

September 12, 2008 by Bill Strong
We have been humbled by the number of publications and blogs that have embraced Gwendolyn's story. We would like to thank a few of them for running stories on her journey, SMA, and our petition. Thank you for your help to end this horrible disease!

You can click on any of the links below to go to or...
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Awesome PEP Moms

August 12, 2008 by Victoria Strong
I am once again blown away by the kindness of others and their willingness to go above and beyond for us. Over the weekend a group of PEP mothers, the parent group I was in before Gwendolyn became ill, got together and hosted a booth on State Street. They passed out fliers, spread awareness about...
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Victoria "spotlighted" on SBParent.com

July 24, 2008 by Bill Strong
Click here to read "Mom On The Move - Victoria Strong"
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