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Birthday Part 2: A Cowgirl Party

October 09, 2011 by Victoria Strong

Yee-haw! Gwendolyn decided she wanted to have a cowgirl birthday party to celebrate turning F.O.U.R. Okay, that was pretty easy to guess since our house is practically a stable with her horse collection. With everything that happened with Gwendolyn's health this summer, we didn't even start...

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Continuing the SMA Charge on Capitol Hill

April 27, 2011 by Bill Strong
Get ready -- a NEW SMA bill is on it's way and we will need YOUR help.

We've always believed that having a consistent, coordinated SMA voice on Capitol Hill is a key component to continuing to move SMA awareness, funding, research, and advocacy forward at the highest level.We've been big supporters...

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Gwendolyn’s Story on the Floor of Congress Yesterday

January 07, 2011 by Bill Strong
Over the years we've been pretty outspoken about our experience with health insurance and our health insurance provider, Health Net (see past postshere,here,here,here, andhere), and our thoughts on the health care reform legislation that was passed in 2010 (see the article on our family in theNew...
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Vote to Help SMA Research

March 16, 2010 by Victoria Strong
Another day. Another contest. We aren't running this one this time. Whew. But our friends over at Stop SMA are and they have a real chance to direct $250,000 to SMA research! Yep, $250k for SMA research!!! It's simple. It's easy. And anyone with an email address can do it.

Four clicks and you are...
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June 28, 2009 by Bill Strong

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June 28, 2009 by Bill Strong

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Sedona, Arizona

June 26, 2009 by Bill Strong

View Larger Map

Trip stats:

* Mileage this segment: Las Vegas, NV to Sedona, AZ --- 276 miles
* Cumulative mileage: 643 miles
* Cumulative gallons of diesel gas: 113 gallons

Sedona, Arizona. What a truly special town nestled amongst a spectacular, unique setting.

We were wowed on our drive in from Las...
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Be the Match Marrowthon

June 12, 2009 by Victoria Strong
A couple of months ago, Bill and I participated in our local Be the Match Marrow Registry drive. It was so, so easy to register (a little cheek swab) and Bill and I left feeling so glad to be part of something so important. I can only imagine what it would be like if Gwendolyn's life could be...
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Happy Anniversary!

June 07, 2009 by Victoria Strong
Six years ago today, Bill and I said our "I do's." Six years ago, on June 7th, we celebrated the start of our marriage. It was a beautiful day and seems like just yesterday. Six years goes by quickly...


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Jesusita Fire Update

May 08, 2009 by Victoria Strong
This is a photo our neighbor took as we were both packing up and evacuating on Wednesday. The fire is spreading and has now impacted everyone we know -- either they are evacuated or are housing an evacuated family. We are very worried about our friends and our community. Please send the East Coast...
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Mandatory Evacuation Continues; We're Staying Put at Gramma's…

May 07, 2009 by Bill Strong
We are safe and sound at Gramma's house in L.A., Gwendolyn is having a blast on her "adventure", and we are being spoiled by Gramma as always. I called our home phone and the answering machine picked up so I'm assuming our house is still standing in Santa Barbara smile To the best of our knowledge the...
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Evacuated

May 07, 2009 by Bill Strong

We are on the road headed to Gramma's. The fire looked fine earlier today, but around 3:30 (when this photo was taken) the wind shifted. We began packing just in case, but quickly things started getting much worse and we decided to hustle. Our neighborhood had a "Warning" when we left, but it...
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Here We Go Again…

May 06, 2009 by Bill Strong

This was the scene from our house in a canyon a bit too close for
comfort this afternoon. The "Jesusita Fire" is in full force and it
feels like we've been dealing with serious brush fires in Santa
Barbara every few months over the last year -- we become a little more
prepared with each one....
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Be The Match

April 17, 2009 by Victoria Strong
Tomorrow Bill and I will be participating in our local Be The Match donor registry drive to donate blood and register with the National Marrow Donor Program. Our event is being hosted by the Junior League of Santa Barbara, but there are events just like this nationwide throughout the year. We are...
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Victoria and I Need Your Help

April 06, 2009 by Bill Strong
Victoria and I are starting a non-profit project called HelpIsHere.org. HelpIsHere is an online community driven website that will help those impacted by life-altering illness answer the difficult post-diagnosis question - What now?

In short, the mission of HelpIsHere.org is to help people navigate...
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Bug antenna hoodie

April 02, 2009 by Bill Strong

Gwendolyn thought she was the cutest thing in the world today (well, she was!!) when I put her bug antenna hoodie on while helping Victoria get her ready for music class. Victoria had to take her hood off to get her bi-pap on in her stroller. Gwendolyn fake-complain-cried until Victoria put her...
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Flower Power

April 01, 2009 by Victoria Strong
Gwendolyn is so funny. She just cracks me up. On walks, she loves to talk about the trees and the flowers and all the things we see. And she gets super excited when she gets to touch whatever it is we are talking about...in this case, a flower. She was so serious about the flower, so proud. She...
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Sleeeeeeeping beauty

March 27, 2009 by Bill Strong

This is Gwendolyn this morning after she completely passed out in her
stroller on our walk. She's NEVER done that before. No pacifier, no
music, no mini-blanket, slightly elevated and on her back -- she just
decided it was time for a nap and took one with Elmo. She's too much!!!
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New Blog

February 22, 2009 by Victoria Strong
Do you like our new blog? We are so excited about it and hope you find it much easier to navigate. At the top we now have an "SMA" section with information about the disease and research that has shaped our philosophy of care and an "About Us" section for a little background on the beginning of...
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Happy Valentine's Day!

February 15, 2009 by Bill Strong

With love,

Gwendolyn

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