Blog Archive 10/2008

Mom's Night Out

October 30, 2008 by Victoria Strong
I had such a great time last night with a group of PEP moms at the Hollister Brewing Co. I don't know if I have laughed that hard for that long in a long time. It was great. What an interesting, dynamic, and fun group of women. Thanks ladies for a fab night!
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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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Lane Farms pumpkin patch

October 29, 2008 by Bill Strong
Yesterday we journeyed out to the Lane Farms pumpkin patch in Goleta. Gwendolyn was struggling a bit so we didn't stay long, but she was so excited to be picked up to look around and take it all in when she heard all of the activity around her. She loved watching all of the people running around...
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Emily Hart-Roberts and NILMDTS

October 28, 2008 by Victoria Strong
During the week of Gwendolyn's first birthday we had photos taken by Emily Hart-Roberts. Emily is kind and sensitive and a very talented photographer. She also works with the organization Now I Lay Me Down to Sleep, a non-profit that provides photographs to families of critically ill or stillborn...
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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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Concern update and changes…

October 25, 2008 by Bill Strong
Last week we were very concerned that Gwendolyn was coming down with a cold. We started a pretty aggressive antibiotic (Augmentin) and rested her on bi-pap almost 24/7 for several days. We're not getting any more sticky secretions and most importantly she seems to be back to herself again....
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1st Birthday Party

October 24, 2008 by Victoria Strong

On Sunday, Bill and I hosted a birthday party for Gwendolyn in our back garden. At first, when we started talking about a party, we thought we were crazy to try to do this -- the time to plan, the risk of germs, would it be too much for her...but, in the scheme of Gwendolyn's life, we knew we...

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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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A day at the zoo!!!

October 23, 2008 by Bill Strong
On Tuesday, all six of us (Gwendolyn, Henry, William, Victoria, Elizabeth, and me), including two car seats and Gwendolyn's bassinet, piled in the GVan and took a trek to the Santa Barbara Zoo. Our friend Dean Noble is the Director of Marketing at the zoo and he coordinated a behind-the-scenes...
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