Blog Archive 09/2009

Warming Up To The Power Chair

September 30, 2009 by Bill Strong

On Monday, we had very exciting "first" -- and much sooner than we anticipated. Gwendolyn got to see and try a Permobil K300 power chair. And it was hot pink!

Our experience with new things, especially big new things for Gwendolyn, is that she needs a warm-up period to get used to the idea and,...

A Request…In Honor of Gwendolyn's Birthday

September 28, 2009 by Victoria

Gwendolyn's SECOND birthday is in less than a week. Yes, birthday week has started and Gwendolyn is thrilled. So, in honor of this significant milestone, we are asking you to do TWO things:

Call your Representative and Senators to ask them to COSPONSOR the "SMA Treatment Accelerations Act of 2009"....

We had a blast this weekend celebrating FOUR very special birthdays!!! And Gwendolyn is COMPLETELY in favor of birthday weekend!

On Saturday morning we went to Bella's 2nd birthday party. Bella had fun decorations, good friends to see, a piano and a piano playing Grammy! She also had chocolate...

SB Axxess Card and GSF Fundraiser

September 24, 2009 by Victoria

Do you live in Santa Barbara area? Do you shop here, dine here, go to the movies here? Well, then the Axxess card is a good purchase for you!!! By purchasing an Axxess card, you will receive discounts at various shops, restaurants, etc. throughout the area AND a portion of your sale will go toward...

VIDEO: Gwendolyn's Rocket Ship Adventures

September 23, 2009 by Bill Strong

Check out Gwendolyn's rocket ship adventures with Mommy! She loves it.

5--4--3--2--1--BLAST-OFF!!!

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...

First Annual Golf For A Cure Tournament

September 21, 2009 by Bill Strong

Gwendolyn's out-of-this world Gramma is up to it again! And this time she's come up with a great way to support SMA research and awareness programs and for everyone to have fun in the process -- a golf tournament -- the First Annual Golf For A Cure Tournament to benefit the Gwendolyn Strong...

H1N1/Swine Flu—No Joke For Us

September 19, 2009 by Victoria

I know we've all heard enough about the H1N1/swine flu on the news to know it is serious -- or potentially so. While the rest of the country flew into hyper mode last spring, Bill and I continued what we do every single day -- washing, sanitizing, and limiting exposure. And while parents discussed...

Unite For The Cure Fundraiser: Thisbe's Promise

September 18, 2009 by Victoria

This Saturday is the 24th Annual Cottage Hospital Family Fitness & Baby Fair. Last year a group of fabulous parents organized a booth at this event to collect signatures for Petition To Cure SMA. They talked to people for hours and gathered hundreds of names in support of SMA research. Well, this...

Gwendolyn Update

September 17, 2009 by Victoria

It has been a busy few days. We are home from Stanford now and are continuing to try to figure out what is going on with Gwendolyn. We are still a bit worried, but are relieved to be tackling the issues.

She is doing fine on the antibiotic, but we are watching her closely to make sure her...